PARLIAMENTARY DEBATE
Hospice Funding - 22 April 2024 (Commons/Commons Chamber)
Debate Detail
That this House has considered the postcode lottery of funding for hospices; and calls on integrated care boards to urgently address the funding for hospice-provided palliative care in their areas.
As a member of all-party parliamentary group for hospice and end of life care, I am very happy to be co-leading this debate with my lovely friend, the hon. Member for Darlington (Peter Gibson), who applied for this debate today.
I have so much admiration for hospice and palliative care providers, and empathy for those experiencing dying, death and bereavement. Both my parents died of cancer, and I will always be grateful for the amazing care that they received. Hospice care is important to so many people and we are very lucky to have St Michael’s Hospice in beautiful Hastings and Rye, and Demelza House, which offers palliative care for children—largely through outreach work.
When my right hon. Friend the Member for Bromsgrove (Sir Sajid Javid) was Health and Social Care Secretary, he announced the legal right to palliative care for all ages. This was in an amendment to the Health and Care Act 2022, which declared, for the first time, a duty for integrated care boards in England to commission palliative and end of life care that meets the needs and demographic of the population it serves.
I could not believe that end of life care was not already a legal right. We should all want to see the best support available for those people who are nearing the end of their lives as well as their families, and excellent palliative care—support for people physically, mentally and spiritually—is vital.
The future of end of life care is uncertain, as increasing costs and demands are putting huge pressures on hospices and care providers. When it comes to the debate on assisted suicide, it is important that people feel confident that their end of life care will protect them from pain and suffering.
Certainly, we need increased funding. More resources are needed for end of life care services, including hospices, home care and palliative care teams. St Michael’s Hospice, for example, costs around £7 million a year to run and it receives about £2 million a year from the integrated care board and the remaining £5 million comes from the community in various forms. Like all hospices, St Michael’s is heavily dependent on the generosity of local individuals, companies, groups and trusts. This funding model is uncertain and unsustainable and places hospices under considerable strain.
Demelza receives just 10% of its income from the children’s hospice grant, which ends in March 2025, and just 4% of its income from spot purchases, so 86% of its income must come from fundraising. I am concerned that neither the UK Government nor NHS England has set out whether the children’s hospice grant, which is worth £25 million, will continue beyond 2024-25. The grant is a vital source of funding for children’s hospices. Dependence on the generosity of members of the public to pay for vital healthcare would not be tolerated in other core areas of healthcare such as maternity services, cancer care or A&E. Hospices are the only statutory service that relies on fundraising to keep going, despite end of life care being an essential service that so many of us will need.
End of life care is an essential service that so many of us will need, but the situation is made worse by inflationary pressures and rising demand. We have an excellent ICB in Sussex—NHS Sussex, led by Adam Doyle—which has highlighted that hospices are recognised as having become increasingly fragile in recent years, due to a lack of resilience in their funding model, which is heavily reliant on gifted income alongside NHS grants.
We have eight hospices across Sussex, and in 2019 seven of them formed the Sussex hospice collaborative—partnership working to ensure that the hospices’ combined resources can be used to maximise the impact, reach and cost-effectiveness of their activities. NHS Sussex works closely with that collaborative arrangement, which has supported the ability to have collective conversations. In January, the APPG on hospice and end of life care published a report on Government funding for hospices. The inquiry found that despite the introduction of a legal requirement for integrated care boards to commission palliative and end of life care, ICB commissioning of hospice services is currently not fit for purpose, and the value that hospices provide to individuals in the wider health system is at risk.
Hospice funding has historically not risen in line with inflation, which has been brought starkly to light during the periods of high inflation in recent years. Costs to keep palliative services running have increased rapidly over the past few years, but that is not reflected in the Government funding that hospices receive to deliver the services, which has increased by only 1% each year on average.
Our ICB is in special measures. We had two meetings with the ICB last week, and it was very unclear about some of its long-term plans and how it is using its funding. Does she agree that we need to ensure that our ICBs are properly managed and run? I am delighted that she has a great ICB. For us, it is a little more complicated. We need to ensure that funding goes through to hospices, so that when there is a state element of funding—one can debate the important nature of fundraising—the NHS money gets through. Right now, it does not seem to be doing so.
The significant funding challenges are particularly concerning in the context of increasing need. Sue Ryder, a palliative and bereavement support charity, projects that the demand for specialist palliative care services in England may rise by 55% over the current decade. That rise in demand is due to several factors, including increased mortality rates and a growing desire by patients to die at home rather than in hospital. We clearly need a commitment from Government to fund a much higher percentage of total palliative care costs than at present to ensure the sustainability of the hospice sector and the vital services that hospices provide in the medium term. ICBs cannot commission specialist services without the funding to do so.
The APPG’s report made a number of recommendations to Government, the NHS and local authorities. On funding, the APPG recommended that the Government produce a national plan to ensure the right funding flows to hospices, and conduct or commission a piece of work to understand the costs of providing different models of palliative and end of life care. It also called for Government funding to address immediate pressures of paying increased staffing costs for hospices, and said that ICBs must ensure uplifts to hospice contracts that are equitable with uplifts received by NHS-run services.
My hon. Friend the Member for Darlington will cover the report in more detail. Hospices need to be able to plan and invest in their services and develop and train specialist staff, so they need to know in advance how much funding they are getting. Hospices already face issues of training and recruitment, and whether they will be able even to provide an adequate service because of funding restraints should not be another worry. My goddaughter is a young doctor who wants to specialise in palliative care, which is remarkable for a young person. We need more young people—more medics, nurses, occupational therapists and so on—in this growing area. A three-year funding cycle at least is required, as it would allow hospices and palliative care providers to plan accordingly.
I conclude my remarks with a worrying Hospice UK statistic: it estimates that the end of life care sector is on track for a £77 million collective deficit for the financial year 2023-24. That would present the worst end of year figures for the sector in around 20 years of tracking. Those losses are not sustainable, and our right to end of life care is at risk unless immediate action is taken. Our hospices, palliative care and end of life services need to be properly funded. Will the Minister outline what steps she is taking to ensure that that happens?
Hospices do incredible work. In communities across the country, they hundreds of thousands of people every year with essential palliative and end of life care. The services that hospices deliver are absolutely crucial to improving the quality of life for people in their final weeks and days, helping to provide a dignified, comfortable and compassionate end of life. That support is vital not just to people at the end of their lives, but to their family and friends. End of life care impacts not just the patient but all their loved ones, and the specialist support that hospices provide patients in their final stages of life, and their families who are watching them pass away without suffering or pain, is immeasurable. It is why hospices are so important.
In my Enfield, Southgate constituency, we are lucky to have a facility of the incredible North London Hospice, which has been caring for people since 1984. Its health and wellbeing centre in Barrowell Green helps to enable the best of life at the end of life for people across the boroughs of Enfield, Haringey and Barnet, providing tailored care, including physical, emotional, spiritual, wellbeing and bereavement support for patients, friends, carers and loved ones. I must also mention those in the wonderful North London Hospice photography club, who support each other and take amazing pictures, which they sell to raise funds for the hospice.
I remember hearing from a constituent of mine, Joy Watkins, who was receiving care and support at the hospice. Joy has sadly now passed away, but her words about the importance of the hospice and the care that she received were incredibly moving. Joy spoke about going to something called a death café—an informal space for people to talk about end of life, share their concerns and listen of others express their thoughts, hopes and experiences of death. She said that going to the death café enabled her to make choices about the end of her life. She could make choices about who to spend time with and about the finances that she would make use of at the end of her life. It transformed the way in which she viewed and handled the end of her life.
The way in which we talk about and approach dying matters, and Joy’s words have really stuck with me. Indeed, they were one of the reasons I introduced my private Member’s Bill—the Terminal Illness (Provision of Palliative Care and Support for Carers) Bill—back in 2018. Next month, Hospice UK will be promoting its campaign for Dying Matters Awareness Week, and I look forward to supporting its efforts on that important initiative. Honest and timely conversations about death and dying are essential to good end of life care, but barriers including lack of confidence, taboos around discussing death, and confusion about who should be having these conversations all too often mean that patients, carers and families may not understand what is happening or get all the information and support that they need. That is where hospices and their brilliant staff come in. More recently, a close family member of mine received support from North London Hospice, and although Gabby sadly passed away, I am so grateful for the hospice’s specialist care.
Yesterday I and about a dozen hon. Members ran the London marathon. I was proud to do so to raise money for North London Hospice. When pounding the streets of London in such a wonderful festival of community yesterday, I was struck by how many runners were, like me, raising money for their local hospices. That demonstrates the sad reality of inadequate central funding for hospices. I have been trying to bang the drum for North London Hospice since I was first elected, and although it took me a few years to muster the courage to put on the running vest and put my knees on the line, as each year passes it feels as if the challenges facing hospices grow greater and more acute.
As we know, hospices are an integral part of our health and social care system. They work in partnership with local health and care systems, helping to reduce the pressure on our NHS by caring for patients who would otherwise be directly supported by NHS services. As a community, we are reliant on hospices—they are important parts of the communities that they serve—but they are also reliant on us for support, through fundraising and donations, because they are largely charitably funded. On average, around two thirds of adult hospice income is raised through fundraising such as charity shops and marathons, and the figure is higher for children’s hospices, which must raise around four fifths of their income.
North London Hospice is reliant on donations from the community each year to fill its £10 million funding gap, as only a small proportion of its costs are funded by the NHS. Of course, the cost of living crisis continues to eat away at people’s finances, which directly impacts on our communities’ ability to provide the vital charitable support that hospices rely on. The reality of the current state of funding is that hospices are struggling to keep up with inflation and rising costs, which is leading to services being cut. However, demand for palliative care continues to grow—for North London Hospice, it has grown at a rate of 5% year on year. The costs of running hospice services, including energy bills and the cost of paying staff a fair wage, also continue to rise rapidly.
Hospices recruit from a small pool of staff in the NHS and care sector, but they are not provided with the same Government funding to meet NHS pay levels, meaning that many hospice staff are doing the same job as their NHS colleagues but being paid less for it. As a result, Hospice UK’s figures suggest an 11% growth in payroll costs this year, which means around £130 million of additional spending that is not met by increased statutory funding. As I have mentioned, those costs are not met with additional uplifts from NHS funding or contracts, and despite a legal requirement for ICBs to commission palliative care services that meet the needs of the local population, the funding that hospices receive from ICBs varies significantly across the country and means that charitable donations make up much of their income.
Many hospices, like North London Hospice, will continue to operate a deficit budget for 2024-25, with the shortfall being met from reserves. Indeed, Hospice UK estimates that the sector is on track for a £77 million collective deficit for financial year 2023-24, the worst end of year figures in around 20 years of tracking. This funding model is simply unsustainable, and will undoubtedly lead to hospices cutting back essential services for patients. The issue is becoming increasingly urgent. We need to look at how hospices are funded in this country. They provide essential support; they should not be a voluntary service that is topped up by whatever fundraising is available. An integral part of our healthcare system is reliant on charitable donations. No other services are funded in that way; it is unthinkable that it would be left up to charities to plug shortfalls in maternity services, for example, so why is end of life care reliant on the kindness of strangers? It is really worrying. We need a far more secure, long-term model of funding that protects our hospices and partners them with the wider health and care system. If we do not properly support our hospices, we are in danger of losing them.
I am pleased that today’s debate has shown the strength of feeling on this issue, and that Members have highlighted the need for greater support and funding for hospices in the UK. That point was made clearly in the excellent speech by the hon. Member for Hastings and Rye, as well as in interventions. I look forward to hearing from the Minister on the Government’s response to the challenges that have been outlined. Finally, I once again thank everyone at North London Hospice for all their amazing work in my community and beyond, and I also thank Hospice UK for all its advocacy on these issues and its excellent briefings ahead of today’s debate.
It is a pleasure to be called to speak in this long-awaited debate, and I thank and congratulate my hon. Friend the Member for Hastings and Rye (Sally-Ann Hart) for moving the motion. I thank hospices around the country that have engaged with me in my preparation for today’s debate, and I thank the Hospice UK team—Toby, Katie and Olivia in particular—for their ongoing support for me and the all-party parliamentary group on hospice and end of life care, which I co-chair along with Baroness Finlay of Llandaff.
I draw the House’s attention to my entry in the Register of Members’ Financial Interests: I am a trustee of North Yorkshire Hospice Care, which operates both Herriot Hospice Homecare and Saint Michael’s hospice in Harrogate. I have served as a trustee of that hospice for over a decade, and have seen the difficulties that piecemeal commissioning causes for our precious hospices. To my mind, this debate is not simply about asking the Government for more money—we know that there are serious public financial challenges post pandemic—but an opportunity to discuss on the Floor of the House solutions to the challenges that our hospices face. I thank the Backbench Business Committee for allowing us to have this debate. The number of Members who wish to speak in support of their local hospices today is testament to how much each and every one of our communities values its local hospices.
This is a matter of life and death. The hospice movement is there to deliver good deaths; that might seem a strange thing to say, but palliative care delivered in the right environment—be that a hospice, a children’s hospice, or a person’s home through a hospice at home service—is a truly wonderful thing. Those precious final few weeks of a person’s life are imprinted into our memories, and it is right that those who are dying, and those who are loving, supporting and caring for them, do so in an environment where there is proper funding and commissioning, and where we can plan and prepare to provide continuing care.
Even post death, our wonderful hospice movement provides much-needed bereavement care to those who have suffered the loss of a loved one. The Health and Social Care Act 2021 made provision for the very first time for the commissioning of palliative care. That is a landmark. Integrated care boards around the country now have responsibility for commissioning palliative care to meet the needs of the community that they serve, which is a good thing. It ensures that local commissioners, working together with local providers and local representatives, can deliver the palliative care needs of their respective communities.
There is a very mixed patchwork picture across the country. During covid, the Government stepped up to the plate, acted decisively and provided much-needed financial support to the hospice movement. That support not only prevented many hospices from failing and collapsing, but ensured that much-needed palliative care could continue to be delivered around the country. The picture today, however, is one of immense challenges for our hospices. Many have failed to receive increased support under their contracts with ICBs to meet the rising costs of energy and staffing. At the same time, our hospitals face increased pressure for beds. It is a fact that one night in a hospice costs less than a night in a bed in hospital, and while there are reasons why a person may need to remain in hospital, better palliative care can be delivered in the more appropriate surroundings of a hospice.
Just last week, I met the chief executive of Sue Ryder, Heidi Travis, who also serves as a commissioner for Cambridgeshire and Peterborough ICB. It was interesting to learn that work is being undertaken to explore ways in which hospices can do more with the same funding, or in some cases less. However, if we are to explore creative new ways of delivering hospice care, either through hospice-at-home models or virtual wards, full and frank conversations need to be had between hospices and their integrated care boards to truly explore the art of the possible.
In the Tees Valley, I have been pleased to be able to bring together, on multiple occasions, St Teresa’s in Darlington, Alice House in Hartlepool, Butterwick hospice in Stockton, and Teesside hospice in Middlesbrough. They work collectively with all eight Members of Parliament covering the Tees Valley, so that there is a collective voice for the region, and so that we can be a beacon of excellence in the provision of palliative care in the north-east. The uplift in funding for those four hospices under the North East and North Cumbria integrated care board is simply not enough, but the fact that they are working together and meeting the ICB is a sign of improving relations, and there is hope for the future.
I wish to touch on the work of our children’s hospices, which a number of Members have mentioned. They are an integral part of palliative care across the country, and I am grateful for the engagement I have had in recent weeks and months with Together for Short Lives. The NHS children’s hospice grant of £25 million from the Government is gratefully received by the sector. However, that funding should be guaranteed for a minimum of three years to enable those hospices to plan properly and commission services, and the amount should be uprated in line with inflation each year. Furthermore, the money must be ringfenced, so that when it is passed on through regional ICBs, the entirety of the money flows to the frontline—to those children’s hospices. I ask the Minister to address that point in her summing up.
In preparing for today’s debate, I asked for information and evidence from Hospice UK about hospices in each of the four nations of our country. Saint Michael’s, a hospice of which I am a trustee, is the local hospice care charity supporting people affected by terminal illness and bereavement across Harrogate. Each year, the vital care it provides costs almost £6 million to deliver. Of that, just 17% is funded by the Government; that equates to a little over £1 million of its total running costs. That leaves over £5 million to be raised through the generosity of its supporters and community. The rise in inflation has put additional strain on its finances, but has been met with a funding increase of just 1.2% from the ICB.
Shalom House in Pembrokeshire needs to raise around £288,000 to keep running, which is equal to £24,000 per month. It receives only £5,000 per month from its health board, and this amount has been halved in the last five years from £10,000. It has not received an uplift for at least the last four years. It anticipates that funding ending in September 2024, when the new commissioning model in Wales comes into effect. Without a cash injection, it is in danger of closing within the next 12 months, as its reserves are low. While Shalom House is small, the impact on the community, like that of all hospices, is huge.
In Scotland, Ardgowan in Inverclyde is, despite a very generous community, facing a deficit of £100,000. It expects this to rise to £172,000 for the next financial year. In the last 18 months, it has seen utility costs rise by 67% and insurance costs by 10%. It needs increased support.
In Northern Ireland, 65% of the funding for Foyle hospice in Londonderry comes purely from fundraising. It is unable to plan ahead or reconfigure services because of the uncertainty about statutory funding, including the outcome of the recent day hospice review. It has received some non-recurrent funding through the cancer charities relief fund, but may be unable to provide those highly valuable services when that funding runs out in March 2025.
We are a compassionate and wealthy country. We have a national health service that, despite some of its challenges, does incredible things, but so too do our hospices—be they based in buildings or in patients’ homes. Our hospices really must be seen as an integral part of our national health service.
Mr Deputy Speaker, mindful of your words, I will bring my remarks to a close in a moment. Philanthropy and charitable giving have been the foundations on which our wonderful hospice movement has been established. To my mind, hospices’ charitable status has enabled them to be flexible and to develop an holistic pattern of palliative care outside the NHS. However, in the 21st century it cannot be acceptable that funding is reliant on pensioners performing skydives and communities baking cakes to fund palliative care.
Much work has been done, and much work must be done by our ICBs and the Government to map the demands and needs for palliative care across the country. We must end this postcode-based patchwork of provision. It really is time that the Government established a rapid taskforce to collaborate with the entire hospice movement and our integrated care boards to ensure that we as a nation have the best provision in palliative care, and that everybody can have a good and peaceful death.
In Coventry, we are extremely lucky to have Myton hospice. Like other hospices across the country, Myton is a critical part of the healthcare system and plays a vital role in providing care for people from the point at which their illness is diagnosed as terminal to the end of their life, while also supporting the needs of their families. The services that Myton provides are a crucial part of palliative and end of life care in Coventry. The work it does and the services it provides not only ease pressure on the wider health and care system in our city, but ensure that patients receive exactly the care they need when and where they need it. Without Myton, patients might find themselves unnecessarily relying on A&E or other hospital departments, which would massively increase the burden on, and costs for, the NHS.
I know at first hand how important Myton is to our city and local communities, because my husband, Ian, received end of life care there. Diagnosed with leukaemia in 2014, he had a stem cell transplant and was fighting his way back to reasonably good health when, three years later, he became ill with an aggressive secondary cancer and was diagnosed as terminally ill in 2018. He wanted to die at home, but we were advised that domiciliary end of life care was “clunky”. Those are not my words, but the words of the NHS care team who were advising and talking to us. That meant that we could not be sure of a timely home visit if my husband needed more pain relief—and he was on a lot of pain relief. He was on a pain driver and I could give him liquid morphine, but that shot, which only a district nurse could give him, might not have been there immediately and he might have had to wait an hour or two hours for the nurse to come. He decided to go into Myton hospice, which is only a stone’s throw away from where we lived, so it was very local to us. He went into Myton hospice, and I stayed with him until he passed peacefully away just one week later. It was a tranquil, respectful place, where all his needs were met, and ours. We were grateful for that real quality time together.
Just before Christmas, I went to an event at Myton hospice where I met staff, the loved ones of those who had received palliative and end of life care there, and the people who fundraise to help ensure that Myton can continue to provide its vital services. It takes just moments when speaking with people at such an event not only to understand the importance of the hospice sector, but also to recognise the huge funding challenges it faces. We know that the hospice sector’s reliance on fundraising for much of its income brings with it significant risks, and those risks have been compounded in recent years, first by the pandemic and now by the cost of living crisis. As a result, the hospice sector is facing a perfect storm, with the cost of delivering services increasing, while charitable donations are volatile and NHS funding is falling in real terms.
Take Myton Hospices as an example: just 20% percent of its funding comes from the NHS, and in real terms that is decreasing every year. That comes at a time when its costs are consistently increasing year on year. For the financial year 2024-25, its running costs will be £14.3 million, and it will need to raise £11 million of that in voluntary income. That is compared with running costs of £13.25 million and raised voluntary income of £10.5 million last year. Those funding challenges inevitably increase pressure on and access to services. I know that more people need a hospice bed than ever before, and demand for beds at Myton has increased by 25% over the last year. As a result, over 70% of people accepted for a bed at Myton will not be able to access one straightaway and will have to join a waiting list. Sadly, three out of four people waiting for a Myton bed will die before they can access one.
Although I understand the funding pressures that Coventry and Warwickshire integrated care board is operating under, that certainly raises questions about whether it is meeting the requirement to commission palliative and end of life care to meet the population’s needs. Indeed, I know that with funding for just four more nurses, Myton could open eight more beds and eliminate its waiting list completely, ensuring that everyone in Coventry and Warwickshire gets the palliative and end of life care that they need and deserve. Those funding challenges are certainly not unique to Myton, and most—if not all—hospices are facing similar problems. This needs to change. If we are to ensure that demand for hospice care is met, both in in-patient units and in the community, and eliminate the inequality and postcode lottery of services, we need hospice funding to be sufficient, resilient and sustainable.
I asked those at Myton hospice what steps they believe need to be taken to ensure we have a thriving hospice sector, with long-term sustainability at its heart. They told me they believe there needs to be a tariff-based approach to funding that reflects the core services provided, so that funding is based on what each hospice provides against clear criteria. They also felt that essential hospice services, including doctors and nurses, should be funded by the NHS. We must ensure that all patients with a terminal illness receive the right care to meet their needs, that that care is delivered with dignity, respect and compassion, and that the end of their life is valued as much as the beginning. To achieve this, hospices must be funded fairly and sustainably.
Hospices play a vital role in local communities and within the wider health and care system, providing care to those at the end of their lives, and support and comfort to their loved ones. St Helena hospice in my constituency is no different, and since its opening on 20 May 1985 it has supported countless families in and around Colchester and north Essex during their most difficult times. However, over the last two years it has been more challenging for it to carry out its vital work. St Helena has averaged a deficit of £l million per year over the past two years due to rising demand, increasing costs, and real-terms cuts to its NHS funding. Similar to cases raised by other colleagues, only 27% of St Helena hospice’s income comes from our NHS, which means that 73% of the income needed to run it is raised through the local community. As is unfortunately common across the country, that income stream has faced its own difficulties due to the increased cost of living.
East Anglia’s Children’s Hospices also plays a hugely important role in caring for families and children in my local area. During 2022-2023 it cared for 532 life-threatened babies, children and young people, and delivered more than 72,000 hours of care and wellbeing support for families. However, every year EACH faces the ongoing challenge of generating 85% of its income from non-statutory sources. It receives only 15% of its income—about £2.7 million—from the NHS and local authorities, mainly on a year-by-year basis via grants and zero-based contracts. Having seen at first hand the impact that hospices have on local communities, and the fondness with which St Helena and EACH are thought of in Colchester and more widely in our region, I can see that it is essential that hospices all over our country are not allowed to fail. That is not only because outcomes for patients will be arguably worse, but because, as a recent Sue Ryder report shows, adequate funding for hospices is more cost-effective than replacing services with the NHS.
As a former Health Minister I want to urge some caution in calling for national solutions for commissioning. Of course we should look at addressing postcode lotteries wherever they exist, but in doing so we must remember that every area is different. The needs of our populations are different, and hospice provision in and of itself is different in every one of our constituencies. ICBs were set up to make local, holistic, system-wide decisions based on their populations’ needs and priorities, always putting at their heart the needs and outcomes of patients, but also looking at system costs, so that there is not that silo mentality in working, and ultimately at what is in the best interests—in terms of outcomes and value for money—for our NHS and the taxpayer. Having said that, I think there needs to be more consistent commissioning. ICBs should commission against service specification.
To conclude, I will make a more general observation: we are not very good at talking about death. Notwithstanding what I said about ICBs, there is a national role here. I would like to see the Government support a population approach to end of life care, involving more people in their care planning, promoting choice and dignity, and supporting community care alongside that. Many people would rather spend their last days at home around their loved ones, their pets and their families, if possible, than die in hospital. Supporting hospices and community services is a way of helping to keep people at home if that is their preference, with not just better outcomes for patients but ultimately better value for our NHS and the taxpayer. I close by thanking all those at St Helena Hospice and EACH for the amazing work they do.
Hospices across the UK provide care and support to 300,000 people every year. They are absolutely vital to our health and social care system, but unfortunately, they are facing serious financial challenges. It has now become a postcode lottery for many of our constituents.
John Taylor Hospice in my constituency, which is run by Birmingham Hospice, does unbelievably important work to support my constituents and their families in Erdington, Kingstanding and Castle Vale. The staff work day and night to make sure people are cared for while they are ill, and I could not be prouder to support them in this Chamber today. I must add that I have worked there in the past. Birmingham Hospice cares for almost 1,000 local people with a life-limiting illness every day. Last year, it cost more than £16 million to run its services, some 40% of which needs to be recovered through fundraising income. Over the past few years, the hospice has seen a significant increase in costs, including the price of energy, food and vital medicines, and a shortfall in funding for staff pay awards. At the same time, fundraising has declined across the hospice sector with the cost of living crisis hitting poorer areas like mine the hardest.
Birmingham Hospice is currently losing £200,000 a month. With inflationary costs and falling voluntary income, the only option to keep the hospice going is to reduce the services it provides. A reduced service will increase inequality across our city of Birmingham and the country. Sadly, more people will die in hospital or A&E as a result, when they could have had outstanding care at the hospice or at home with the support of the community team.
The hospice is dedicated to ensuring that outstanding care at the end of life is available to all, but it has recently been in the difficult position of having to make essential staff redundant to maintain financial security. That is not just happening in Birmingham; nationally, Hospice UK estimates that 100,000 people in the UK who could benefit from palliative care die without receiving it each year. Hospices play a huge role in alleviating pressure on our NHS, and they do not have the ability to reset their budgets on 1 April each year, as the NHS does. Instead, their deficits continue and the valuable care that they provide to local communities such as mine is at risk of being lost. I have worked in the health service all my adult life. When we speak about hospices, we rarely mention the vital role that they play in providing respite care and support to the family of someone who is ill.
My constituency is the fifth poorest in the UK, and our communities are in some of the UK’s so-called left behind neighbourhoods. For places like mine, respite care is so important to ensure that carers get the break and support they need to keep them doing the incredible work that they do.
I am a nurse, and it breaks my heart that the NHS is in the worst state it has ever been in. Throughout the 14 years of this Tory Government, I have seen doctors striking, nurses striking, technicians striking, people queuing around the block for a GP appointment, people pulling out their own teeth, the highest waiting times in history, and complete disdain for the service that quite literally serves us from birth to death. We must have a national care service and we must properly invest in our NHS. It is no longer acceptable for hospices to rely on charitable donations to try to survive. Now more than ever, our hospices and our NHS need a Labour Government.
It was a privilege to visit Queenscourt Hospice in 2022 and meet the dedicated nursing, operations and fundraising teams. I found their passion and commitment to serving Southport and the surrounding area truly inspiring, and I am committed to supporting their invaluable work. It is clear that the hard work of Debbie Pierce-Lawson and her team is paying off in Southport, and it is testament to the hospital’s embedded role in our community.
Similarly, my visit a few years ago to Claire House Children’s Hospice highlighted the immense dedication and heartfelt contribution made by staff and volunteers. Their commitment to providing care for every child is commendable. Their work brings indispensable comfort to affected children and their families during unimaginably difficult times, yet despite those immense and inspiring local efforts the recent Hospice UK briefing projects a £77 million deficit across the hospice sector for 2023-24.
Queenscourt Hospice, which needs nearly £3 million to operate each year, receives only 20% of that and has to raise the remaining amount through exceptionally hard fundraising work. That figure is not merely a statistic but a stark indication of the financial hurdles facing our hospice care system.
Hospices are cornerstones of our healthcare system, offering invaluable support to over 300,000 individuals annually. That support extends beyond patient care to providing relief and assistance to families during the most challenging times. Hospices’ remarkable efforts in fundraising underscore the community’s recognition of their vital role. However, the sector’s reliance on charitable income highlights the need for a more structured approach to funding.
It is heartening to see the Government’s commitment to palliative care, notably through the Health and Care Act 2022, which introduced a legal duty for integrated care boards to commission palliative care services. That is a positive step forward, ensuring that the needs of the local population are met. Nevertheless, despite those strides, the variability in funding across the country and escalating operational costs represent ongoing challenges.
I am proud of our Government’s record in supporting hospices in the broader NHS. However, I recognise that as the demand for palliative care increases, we must continue to evolve and support the system so that it remains sustainable for the future. The anticipated growth in palliative care needs, with an estimated 130,000 additional deaths annually by 2040, underscores the urgency for developing a sustainable funding model. Such a model would empower hospices to continue their work in partnership with the NHS, providing compassionate care and support.
As I participate in the debate, I firmly believe in the Government’s ability to address those challenges. I hope to hear that commitment from the Minister when she winds up the debate. By fostering a collaborative approach with the hospice sector, we can ensure that hospices in Southport and across the United Kingdom are not just sustained but supported to continue to provide critical services to those who need them.
The first point is about adult services for my constituents. For many years, those services have been provided by the Pembridge palliative care unit, which is an adult community-based specialist palliative care unit just over the border in North Kensington. It is a fantastic place—I have visited friends who have been dying there—and I am aware of its wide range of services. Those are—or at least were—not just in-patient care but telephone advice, community care nursing and therapy teams.
As I said, there was a wonderful in-patient unit; unfortunately there is not at the moment. The ICB is consulting on various options, some of which would see that unit reopen. It closed allegedly not because of funding but because the consultant left and it was not possible to recruit a consultant to fill the post. I would have some sympathy with that were it not for the fact that it closed in 2018 and we are still waiting for the NHS to provide a consultant so that we can reopen the service, which is exactly what all my constituents want.
I note that in the latest consultation, in which there are options to reopen, the NHS said:
“We have heard there is still a strong desire for the Pembridge in-patient unit to be reopened and that options from the public for how we could reopen the unit could be more widely considered than they have been to date.”
That is putting it somewhat mildly. It is an indication of the parlous state of some services around the country, despite the hugely high-quality service they provide.
The other issue is about children’s hospice services. Those for my constituency—in fact, for the whole north-west London ICB, which covers a population of 2 million people—comes from Shooting Star Children’s Hospices, which the hon. Member for Twickenham (Munira Wilson) mentioned because it is based in her constituency. It wrote to me recently and said that it supports
“700 families living across Surrey, south-west London and north-west London. Our specialist care and support are completely free of charge to families and available 24 hours a day, 365 days a year. It includes specialist nursing in the community, symptom management and pain relief, overnight respite stays, end-of-life care, specialist bereavement care and a comprehensive range of therapies, groups, and clinics for the whole family.”
The majority of its funding—we have heard this from hon. Members on both sides of the House this evening—comes from fundraising; approximately a third is funded from statutory channels. Each £1 received from statutory channels necessitates the raising of an additional £2 to sustain its service. I cannot imagine that happening in many other areas. There are other examples of charitable funding, such as for air ambulances, but I am pleased that that is not the norm in the health service. The plea that Shooting Star Children’s Hospices makes is for
“properly funded paediatric palliative care across the UK”,
to
“create a level play field in terms of funding”.
What could possibly be unreasonable about that request or—I would rather say—demand?
On the back of that request, I attended—I think a number of hon. Members in the Chamber did—the recent meeting held here, which was organised by Together for Short Lives. I was incredibly impressed by it. At the meeting I met the chief executive of Shooting Star, Paul Farthing. At his request, I have written to the head of my local ICB to request, in the first instance, simply that it meets, discusses and get to know the services that are better offered.
One of the problems with the majority of funding coming from the voluntary sector through fundraising—I understand why that is important and we want it to continue, as it renews links with the communities—is that there is less of a connection with the statutory sector than there would be in other respects. ICBs need to work very closely with their local hospices, even if they are not based in the same geographical area, as is the case in my constituency. They jointly need to have a plan for how to go to the Government and persuade them that we need stable and ongoing funding, lasting more than one year and covering the impressive range of services that I have mentioned. Without that, a lot of services such as Pembridge will be in doubt.
A Member mentioned assisted dying, which we are debating next week. The two things are related but separate. We want the most compassionate and clearest services for people at the end of life. Part of that is ensuring properly funded hospice services, whether for adults or for children. I again thank the organisers of the debate, the hon. Members for Hastings and Rye and for Darlington, for bringing this matter to the House’s attention. I hope the Government are listening.
As has been said, the hospice sector does a remarkable job and plays a pivotal role in our health system, providing care and the support needed to those who watch their loved ones pass away, and wonderful care in those weeks until that point. That happened to me and many of my dear friends upon the passing of my office manager Sue Hall on 30 March 2023. She passed away at the age of 57 from lymphoma, leaving her husband Jerry and her daughters Phoebe and Rosie. She was cared for fabulously by the team at Mountbatten hospice in my constituency. The family and I were able to count on the support of the fantastic staff at that hospice, who not only provided the best care that Sue wanted, needed and deserved, but gave us the wraparound support during and after that period.
Like many hospices, Mountbatten provides 24/7 in-patient and community domiciliary care to Southampton and large parts of Hampshire. It supports around 1,000 families every day. Demand for its services is expected to rise by 40% in the next 18 months. It costs £11.5 million to run every year and relies on fundraising, which equates to around 70% of its total budget. NHS contracting represents around 30% of services delivered. However, the funding models in place are inadequate, with the ICB giving only a 2.4% uplift in the contracting of services, when the real rise in costs requires an 8% uplift. For 2025-26, the Hampshire ICB has once again said that there will be no uplift, which means that Mountbatten will need to find an extra £750,000 just to provide the same services that it does today.
It will cost Mountbatten an extra £750,000 just to provide the same services, while the number of people it supports will rise by 200%. The Minister will say that this Government awarded another £1.5 billion for hospice services through ICBs. That is entirely welcome, and I congratulated her on her announcement in my debate last year. But I say now what I said in that debate: the ICBs are not passing on the money for the purposes set out. ICBs—particularly mine in Hampshire—are riding roughshod over the Government’s wishes and are exacerbating a problem in a system that already fails to take into account the varying nature of needs across different parts of the country.
My hon. Friend the Member for Isle of Wight (Bob Seely) and I had a meeting last week with representatives from our ICB. I asked how much of that £1.5 billion had been awarded to the Hampshire ICB. They could not give an answer. I asked how much of that was allocated to hospices in the region. They could not give an answer. I say what I said last June to the Minister, who is doing an excellent job: that money was very welcome but I hope we can look at a better way of holding ICBs to account, to ensure that when the Government put hard-pressed money into our health system, ICBs deliver it to the frontline services for which it was intended. That is no different in Hampshire. The leadership of Hampshire ICB needs to look at that seriously.
Mountbatten also has to compete with the NHS for its workforce. It rightly chooses to pay and award its staff along the same pay guidelines as NHS staff. This year, that represented a 4.8% rise in costs, and will represent a further 5% next year. Again, I thank the Government for awarding an extra £450,000 to Mountbatten, but that will still leave a deficit of £1 million overall this year. It is right that it chooses to pay its staff adequately, but that will mean Mountbatten will have to lay off some of its workforce, harming outcomes for families in my constituency. That will be the case in the rest of the UK if other hospices have the same problem.
The funding instability—which in my case I blame on the ICB, which is leading a review into hospice care—seems entirely one-sided. It will end up costing the NHS more money, as hospitals will pick up the burden of care, and beds will be used by people who should be in hospices. We all know the impact that energy bills and covid had on the sector.
I do not mean to sound depressing to the House, but we must continue to look at this issue. The Government’s investment is extremely welcome, but we need more. I would like to hear from the Minister how the Government and the NHS nationally intend to work together to provide a sustainable long-term funding settlement for hospice care, while retaining that independence that hon. Members have outlined. We need the Minister to review how much money ICBs are passing on to hospices, and to take a stronger line in reviewing the role of ICBs and holding them to account if they are not giving that money to the frontline.
The Government, the hospice sector and the ICBs have a clear choice: a sustainable funding model for our hospices, or more pressure on an already stretched national health service. The hospice staff I have met care and want to deliver on the challenge that many of our constituents face across the United Kingdom, but they need a level playing field in order to provide that care. Let us help them do that and improve hospice care.
“Having worked with people at the end of life through my career, I didn’t know care like that was possible.”
However, as with all hospices, if funding is not addressed, such care will not be possible.
It was this Parliament that inferred the duty, through the Health and Care Act 2022, to address the inequality in access to palliative and end of life care, so that everyone can have the best clinical and holistic support possible, if the right funding is stabilised and put in place. Currently, however, we know that many people—Hospice UK says one in four—are not accessing palliative care. That is 150,000 people every year who die without the support they require. That number is set to rise 25% by 2048 and, according to Marie Curie, by 13% in the next decade. This debate cannot just be about what happens now, but what happens in the future.
In York, the hospice ran an £800,000 deficit last year. The hospice at home funding has remained static for the past seven years, while demand has doubled and the ICB has provided just a 1.2% increase. Sue Ryder believes that the real cost increase over the past year was 10%. Hospice UK figures released say there has been an 11% increase for the payroll this year to around £130 million. Martin House, the local children’s hospice, costs £9.9 million to run. With a total income of £8.6 million, it had a £1.3 million deficit. Only 18% of its funding came from the statutory sources, £1.1 million came from the national children’s hospice grant and £700,000 came from the ICB. Hospice UK estimates a £77 million deficit for the financial year just past—the worst for 20 years.
As demand and costs are rising, the funding is not rising to match. As of 12 April 2024, St Leonard’s hospice in York did not know how much money it was getting from the ICB: left to carry all the risk and left to depend on its reserves, and that, of course, not guaranteed for the future. Martin House, which is also using its reserves to expand its services, knows that it will have only six months of reserves. It certainly does not know what is happening with its funding after this financial year.
The children’s sector, yes, has received a grant, but what comes next? We cannot just run our hospices by running marathons and running charity shops. It is driving inequality. In areas of greater deprivation, fundraising is even harder and therefore the hospices are getting even less money.
In York, of the 1,000 people who benefited from St Leonard’s hospice last year, 50% received hospice care at home. That number will grow over time and we need to ensure those services are there as they are needed. Of course, we know that if people are not on that pathway they end up in the acute service. They are put through the trauma of A&E, costing the NHS goodness knows how much, and then they do not get the care they need. Trinity Hospice talked about what it was doing to divert people away from that pathway and into proper care, either at home or within its wider services. There is much still to secure on that front.
If I may, Mr Deputy Speaker, I will raise just one more major point before I close, which relates to inequality. We know there is real inequality at the end of people’s lives. Some of it is based along socioeconomic lines, and some of it is emphasised within minority communities. We need to deal with that to ensure we have universal provision, address the death literacy of our nation, and ensure the support is there when it is needed. I am particularly concerned about the lack of comprehensive funding for our palliative care services.
I urge the Minister to look at funding staffing costs, which are 69% of all funding. It has been suggested by Marie Curie that 70% of funding come from the state, and I think that is about right. We can phase that in, but we need to ensure we address the inequality that is driven through the system. We need to put in the research that is needed, so there is better data on who is accessing care and who is not, and we need to ensure that we are pushing palliative care as far as we can. If we do not, and we debate assisted dying, I am worried that people will be fearful that they will not be able to access the care that could be possible should that service be properly funded. I really urge the Minister to make that a priority before that debate takes place. Mr Deputy Speaker, I will end on that point.
May I start with some positives? I do not want to steal the Minister’s thunder, but there has been some really good support for hospices in recent times. We heard about the covid support. The Government gave around £400 million to increase capacity and to enable patients to be discharged from hospital. We saw hospices benefiting from the Government’s energy bill relief scheme until April last year and, since then, the discount scheme until March this year. As we heard earlier, there has been an increase in the NHS England children’s hospice grant from £12 million in 2019-20 to £25 million in 2023-24. I believe that that has, since July last year, been committed through to 2024-25, albeit it is now allocated through ICBs rather than directly.
So why are hospices struggling? I think that the answer is best encapsulated in a recent report from the Health and Social Care Committee, which stated that funding for specialist palliative and end of life care was “insufficient and unsustainable” and was creating
“inequality in access to and quality of care.”
What does that mean for hospices in my constituency and across Cheshire? Let us take the Hospice of the Good Shepherd in Chester, which is just outside my constituency but serves many of my constituents. As its chief executive, Rhian Edwards, informed me, last year it delivered more than 2,000 hours of direct care per week, supporting 476 patients and their families. To do so, it used £4 million of its own charitable funds, with the ICB contributing £1 million. Over three years the ICB contribution has fallen from 22% to 20%, and is expected to fall further to 16% in the next financial year.
This is against a backdrop of running costs—80% of which are staff costs—shooting up, mainly as a consequence of the requirement to match pay awards for medics and nursing staff, welcome as they are for those workers. The impact is a forecast operating loss of just under £1 million for 2024-25, and there is a similar scenario in nine out of 10 hospices in the country. Rhian told me:
“although we’ve always struggled to balance our books, this level of deficit is feeling very different.”
Another example is St Luke’s hospice in Winsford, which has been providing palliative care since 1988. It has 162 members of staff, and 95% of the workforce live and work in Cheshire. It has 700 volunteers and 10 charity shops. At the heart of this incredible organisation is a charitable purpose, and it does amazing work, but only 12% of its income is received through the NHS and the ICB, one of the lowest percentages in support packages of this kind across the country. It costs £5 million to run St Luke’s, so it has to raise—I have worked this out—£8 a minute to keep its services going. Within the Cheshire and Merseyside region, it receives about £1 million less grant funding than a hospice of a similar size in Merseyside dealing with the same end of life care.
Welcome though the extra funding was during covid, the fundamental financial issues facing hospices have not gone away; they have simply been postponed. This financial year, for example, will see a £350,000 black hole in the finances of St Luke’s, not helped by a staggering 60% increase in its utility costs. Neil Wright, its chief executive, explained to me:
“As a charity, we have a fiduciary duty to balance the books. This means that without progressive investment of sustainable funding, hospices will have to reduce and eventually stop services over the coming years. This will then place 100% of the financial burden of EoL”
—end of life—
“care back onto the already overstretched NHS”.
So what can be done? Hospices such as St Luke’s are not looking for, or expecting, 100% funding; they just want a sensible, sustainable funding formula. At present, however, ICB funding does not reflect the true cost of clinical care. When it comes to sustainability, as other Members have said, we need multi-year contracts to give hospices the confidence to deliver their services and invest, grow and develop to meet the needs of their communities. We have the NHS long-term workforce plan, which is hugely welcome and, I believe, provides a real opportunity to assess—fully and rigorously—and deliver the palliative and end of life care services that are necessary to meet the growing demand over the coming years and decades.
It is also worth remembering that some people face greater barriers in accessing palliative care, including those who live alone, in poverty or with dementia, as well as those with learning disabilities. In the end, if we do not secure the long-term future of hospices, we will have created a false economy and a false reality. If we do, we will not only reduce pressure on NHS services and have fewer unplanned and potentially avoidable hospital admissions, but will ensure that we can deliver compassionate care for those coming to the end of their lives and for their families and loved ones, thus demonstrating that we are a society that values both a good life and a good end of life.
Over the last year or two, our hospice has merged with the Michael Sobell sports centre. We now provide a bedded unit, daycare facilities, respite care—particularly for unpaid carers—and a hospice-at-home service. My hon. Friend the Member for Hammersmith (Andy Slaughter) said that debates such as this allowed us to pay tribute to organisations, and I certainly pay tribute to Harlington hospice. I pay particular tribute to the volunteers, including the chairs over recent years. I hope they will not mind my naming them: Brian Neighbour, who was formerly one of our local councillors, Carol Coventry and, now, Michael Breen. These volunteers give up their time and bring their professional skills to this work. We have a wonderful medical director, Ros Taylor, and an incredibly hard-working chief executive, Steve Curry. Their efforts provide the services and have enabled us to survive, but it has been tough. Like the hospices mentioned by a number of other Members, we have just had to lay off some staff. There is nothing tougher than having to lay off staff who are so dedicated.
The issue for us, as always—this has been reflected throughout the House today—is the need for core funding on a sustainable basis. We need something like a five-year plan that we could work to. I know that sounds a bit Stalinist, but sometimes they work; sometimes they do produce the tractors! We need consistency over a period. As Members on both sides of the House have said, including my hon. Friend the Member for York Central (Rachael Maskell), if we could rely on staff funding from the state, that would lift the burden to a certain extent. We will continue the fantastic fundraising that is currently happening, but in a working-class community like mine, during a cost of living crisis, it is not that people do not want to give, but they do not have the resources to give. We have had a bit of a rough time now and again. A number of corporate organisations have helped us through, but even then, when they are looking at their margins during an economic recession, or when times get hard, there is a downturn for us as well. We just need the consistency of funding over a period that will enable us to build on our services.
At present our services are swamped, and the range of services is becoming more complex as well. We were providing a lymphoedema service at one point. The complexity of the millions with which we are dealing requires more specialists, and that in turn requires more funding. Although there have been percentage increases in NHS funding, they have gone nowhere near meeting the real costs that are challenging us at present. We have a good relationship with our ICB—we work with bids for contracts, and with other community organisations delivering on the ground—but we want consistency of approach.
We have organised a conference for 8 May. It is called “Death, Dying and all that Jazz!”, and it will bring together a range of clinicians and others, along with Hillingdon Hospital and other volunteering services, under the auspices of Harlington hospice. We will look at what we are undertaking, what is needed, and how we plan for the future. If the Minister would like to visit the conference or send representatives, we would welcome that. We want to engage in discussion. We are coming up to a general election, but I hope that this will not become a general election issue, because what we have seen in the House and in the work of the all-party parliamentary group, which I commend, shows that there is consensus on the core principles of the way forward.
If we could secure a long-term commitment on a cross-party basis, we could go back to our hospices, talk to our executives and trustees, congratulate them on what they are doing, and give an assurance that they will have a rock-solid financial base on which they can build, thereby allowing them to rise to the challenges in our communities.
My final point is about the demand that we face. Eight people die in hospital for every person who dies in a hospice, yet most of those eight people would prefer to die either at home or in a hospice. That is the challenge we face, and we have seen tonight that we have the wherewithal to meet that challenge, and ideas on how to do so.
It is really important that we take a moment to reflect on exactly what hospices are asking for, because there has been a slight variety in what hon. Members have said. It is as the right hon. Member for Hayes and Harlington (John McDonnell) said; I may not agree with him about having a five-year plan—that is too reminiscent of tractor production—but I agree that hospices are calling for consistency of funding. One of the many constituents who wrote to me talked about the need for a national plan to ensure that the right funding flows to hospices, and so that there are national measures to support integrated care boards with their commissioning decisions—we heard about that earlier. As a result of the Health and Care Act 2022, we also need to make sure that hospices have multi-year contracts, that they are paid the full cost of commissioned clinical services, and that they see the same uplift in payment that other parts of the NHS see. We know that that is not happening in Hampshire.
My constituents are not calling for hospices to be taken over by the NHS. That is a really important point to make. It would be the wrong way forward. The amazing hospice in my constituency, St Michael’s, together with Naomi House and Jacksplace, which my hon. Friend the Member for Winchester (Steve Brine) referred to and are in his constituency, provide support for more than 1,000 families a year in our area. They are amazing because of the people, and I thank all the staff, the volunteers and the people who help run the shops—they are an incredible army. The hospices are also amazing because they are fiercely independent charities and can, as a result of their independence, do things that the NHS finds it difficult to do “at pace”, as they now say. I give the example of the introduction of hospice at home in my constituency many years ago. It was done because there was a need in the constituency, not because that was set out by central Government or the NHS.
The other reason why we need to retain the fierce independence of our local hospices is that they involve the community. I want to mention the people I am joining on Saturday for the bluebell morning in Steventon, which is organised by Julian Pilcher. I am going there with my right hon. Friend the Member for North West Hampshire (Kit Malthouse) and others, because the walk raises thousands of pounds every year to support our local hospice. The hospice is part of our community —we help to shape it, and we absolutely help to fund it—but there needs to be a better balance in the way that our hospices are funded. The Health and Care Act 2022, which introduced the statutory duty on ICBs, forces that point. I hope that the Minister can help us understand how she will assist ICBs to do their job better, but also that she will look at the variance in funding. The hospice in my constituency receives a very small proportion of what some other hospices in Hampshire receive, and the disparity in funding is causing feels unfair, particularly when costs, especially wage costs, are increasing and there is an increase in demand.
I hope that the Minister can consider three points. First, how will she support the ICB to better plan for removing the enormous disparities in funding between hospices? Hospices’ needs are no different, although sometimes their fundraising capacity is a little different. More than 80% of my hospice’s funding comes from local fundraising, but how can we make sure that the NHS disparities are ironed out?
Secondly, how can we make sure that as funding moves from NHS England to local ICBs, funding streams such as the children’s hospice grant do not create administrative nightmares? My hon. Friend the Member for Winchester talked about that—about places like Naomi House having to negotiate with up to six ICBs to ensure that it continues to receive the same amount of funding.
Thirdly, I hope that my hon. Friend the Minister can touch on the situation following the introduction of the Health and Care Act 2022, because there needs to be more certainty in forward planning for hospices. There need to be multi-year contracts to provide that certainty, especially given the cost pressures that hospices face.
I draw my remarks to a close by giving additional thanks to all the organisations throughout my constituency and north Hampshire that help fund my local hospice, whether through the Sherfield Oaks golf day or the moonlight walk around Basingstoke. I thank our local furniture store and the six shops—the list goes on. People go above and beyond, giving their time, money and energy to make sure that St Michael’s hospice is at the heart of our community. I do not want to see that changed, but I want the Minister’s help to make sure that that fantastic organisation gets support from the NHS when it needs it, and certainty around funding.
Hospices have touched so many lives in all our constituencies. St Gemma’s hospice in Leeds serves my community and has a special place in my heart because my grandma, mum and auntie all received care there before passing away, and the staff did a fantastic job. It was 20 years ago last month that my mum passed away there. Looking at the St Gemma’s hospice Twitter feed this evening, I saw that a friend of mine, Liam Raftery, who was a fantastic musician in a Leeds band called The Latchicoes, passed away there at the age of just 30 in 2017. I did not realise that it would have been his 37th birthday yesterday until I saw the St Gemma’s hospice Twitter feed.
The work that hospices do touches all our lives, and they do a fantastic job under incredibly difficult circumstances. St Gemma’s cares for over 300 people every day, and around 2,000 patients each year, but as we have heard from various speakers tonight, funding is a huge issue. St Gemma’s funding from the NHS covers less than 30% of the total hospice needs, so we need core funding on a sustainable basis. St Gemma’s hospice is budgeting for a deficit of over £500,000 in this financial year, which is why it has had a fundraising drive online over the last 48 hours. If people donated to St Gemma’s hospice before 8 pm tonight, their donation would be matched—in other words, it would be doubled.
I was delighted to see that, due to the generosity of people in Leeds, the hospice more than exceeded its target of raising £200,000 in just 48 hours. That shows how valued the hospice is in our community, as well as the generosity of local people. When I last went to St Gemma’s hospice and met the chief executive Kerry Jackson and her team, one of the things they made clear, and are still making clear, was that fundraising drives in general are becoming harder and harder to do. That is because of the cost of living crisis. People want to give but they cannot necessarily give as much as they used to. The people who run and work at St Gemma’s hospice are clear that NHS funding is not sufficient. They say that it covers less than 30% of the total hospice needs, so we need to see a change.
People have mentioned the independence of hospices, and that is important. We cannot have a situation where the people working in and running hospices in some of the most stressful circumstances imaginable, at a crucial and painful time for those who are losing loved ones, are worrying not only about how to care for people in the last moments of their life but about funding.
I want to end by saying thank you to each and every person who works at St Gemma’s hospice in Leeds, to the team who work there day in, day out, and also to the people in Leeds for their generosity. Even in tough times, they are donating and raising money for St Gemma’s hospice. Long may it continue the fantastic work that it does, but we need to ensure that sufficient core funding is provided so that it can do that work more easily in the decades to come.
In February when I met Dr Sarah Wollaston, the chair of the Devon integrated care board, I asked about the service and was assured that it was all fine and the money was being found. When this debate was announced —many thanks to my hon. Friends the Members for Hastings and Rye (Sally-Ann Hart) and for Darlington (Peter Gibson) for securing it—I contacted Stephen Roberts at the end of the recess and said that I would like to check that this was all okay. He told me that my email was timely because everything was not okay, despite having had endless meetings with the integrated care board. He asked me to share with the House tonight some of the email that he sent back to the integrated care board following a phone call with its new chief executive, in which he said:
“Thank you for your time yesterday. I thought it would be prudent to summarise in an email where we have got to as there is nothing on paper or email that corresponds to the discussions we had around your offer of £95k. As a summary as to where we stand today: North Devon Hospice’s Hospice to Home Service is dedicated to support palliative patients who are at the ‘end of life’ stage through: increasing care at home, reducing unplanned/avoidable hospital admissions, and expediting hospital discharges.”
He goes on to detail the 15 staff who deliver that vital service, which costs just £495,000 and which the North Devon Hospice charitable funds have covered for the last decade. He said:
“North Devon Hospice asked for funding support of £157,540 which represents the same level of commissioning support as our bedded unit and community nursing team receive. Devon ICB have stated that they are willing to provide £95k as a one off”
before the next commissioning review period. But he said that the hospice had to state in return:
“due to our year on year million-pound deficit, having funded the service for 10 years and propped up the cost of this service through cost management elsewhere in the organisation we are no longer able to support the service which is at its minimum establishment to be able to operate.”
The hospice has been advising the ICB of this for three years.
My hospice requested that the ICB find the additional £65,000 to get it through to the end of the year. The chief executive took this back to the board to see whether we could get that seven months of cover through. However, it has now been through a full board meeting and consultation, and this is where my email came in. He finished his email to the ICB by saying:
“I sincerely hope that the good faith you have asked of us extends to Devon ICB’s good faith in finding the extra £65k.”
The email that he sent to me at the end of the recess says that he met the ICB chief executive,
“and he asked for 8 more weeks to see if he can do something, no promises made. My Board met last night where we agreed to wait for his response before making any decisions on the service. Therefore, any pressure you can apply would be greatly appreciated. The headline is: ‘Has it really come to the point where we have to beg for £62k to stop 32 people dying in an Emergency Room?’”
That was four weeks ago, and the hospice has still heard nothing. Our ICB is also in special measures. I beg the Minister to intervene and see if we can help our much-loved hospice, as well as tackle the ever-growing issues we have with our integrated care board back home in Devon. The hospice to home service is hugely valued by families and ensures that their loved ones can spend their final days at home, not in hospital. It also helps by taking the pressure off North Devon’s much loved, very small hospital. As it says across the shops back home in North Devon for our hospice, “Your life is a story, and the ending matters.” I very much hope that there is a way to secure the future of this hospice to home service to ensure that we have many other happy endings.
There will be no Member in this House who has not had some form of contact with hospice care, either through our roles as Members of Parliament or in a more personal nature, as many of us have. I will tell the House a quick story about that. We cannot talk about hospice care without acknowledging the level of care that is provided by the world- class staff in hospices. Every one of us knows that, having dealt with those who give that care. Having seen the work that they carry out and the compassion with which they do so, I know that it is certainly a calling, because money could not pay enough to deal with the emotional toll of this work.
I knew a lady who worked as an occupational therapist in the national health service, and we got on quite well. She went on holiday to Greece one September, and she came back and went to the hospice. She was not feeling well, and the doctor told her that she had only four weeks to live—she had cancer of the liver. I remember going to see her at the Marie Curie hospice care headquarters on Knock Road, Belfast; it was my first introduction to hospice care. I said to the girl on the desk, “Would you tell Anne that I came to speak to her?” And the lady said, “Just a minute, and I’ll go and see if she wants to speak to you.” I said, “No, don’t worry about that, because it’s not important—just tell her I called.” I realised that day that Marie Curie hospice care is incredible, having seen what it did for Anne and her family.
As I said in my intervention on the hon. Member for Hastings and Rye, I believe that faith and family are important whenever our heart is breaking and our world is falling apart. The Marie Curie hospice in Belfast makes sure that people have faith to help them through those difficult times, which is important.
From offering light-hearted banter while helping people in embarrassing situations to being the scapegoat for anger or frustration, to being the last person to hold a person’s hand when their family do not make it in time, being a care giver in a hospice is more than a job. From the bottom of my heart, and from the bottom of all our hearts, I thank all those who do what most of us could not do—love and serve to people’s last breath, day in and day out. I thank every healthcare attendant, every nurse, every doctor, every porter and every pharmacist, and the entire team who provide the best end of life care and offer a support system to lost and grieving families.
The hon. Member for Walsall North (Eddie Hughes) is no longer here, but he mentioned a sponsored walk and encouraged the right hon. Member for Hayes and Harlington (John McDonnell) to be involved. Like the right hon. Gentleman, I could not run a marathon, and I probably could not walk it, but he and I could probably dander it—that is the third category. We are danderers. I could do 26 miles, but it would be at my own pace. I am sure everyone else would be on their way home whenever he and I crossed the line—that is a story for another day.
We cannot pay hospice workers enough, but we have a responsibility to ensure that there is enough money to pay them. I do not feel we are currently doing enough, as other Members have said very clearly. The consensus is that we all want to see them paid better, and we want to see the care continue.
Northern Ireland Hospice provides specialist palliative care for more than 4,000 infants, children and adults in Northern Ireland with life-limiting conditions. The charity, which includes the only children’s hospice in Northern Ireland, says that it faces a number of challenges,
“not least of which is the ever-growing cost of this service. Government funds approximately 30% of service costs”.
The hon. Member for Darlington (Peter Gibson) spoke about Foyle hospice, which has to find 65% of its service costs. Well, every other hospice in Northern Ireland has to find 70%, relying on the
“goodwill and generosity of voluntary donations and other fundraising activities.”
The people of Northern Ireland are generous to a fault. Understanding Society data suggests that Londoners donate the most, with an annual average of £346 per donor. That is due to a handful of large donors, which I understand is the issue. People from Northern Ireland donate £344 a year to charities in all sectors, not just hospice care, and last week’s figures show that Northern Ireland donates more than anywhere else in the United Kingdom of Great Britain and Northern Ireland. Scotland, at £282 a year, and the south-east, at £270 a year, are the next highest donors. I am proud that we in Northern Ireland are givers, but this has allowed what is tantamount to an abdication of responsibility by those whose duty it is to see this care carried out.
We all support the Marie Curie coffee mornings. They are bun fests, which is not good for a diabetic. People make their donation and drink their tea or coffee. That is what it is about. It is not about what people get out of it; it is about what they give. To me, the Macmillan coffee mornings and Northern Ireland Hospice events should be about providing additional help, not providing the foundation of their funding. We and the Government must step up.
People do not have great disposable incomes, so the coffee mornings intended to raise money for a nurse raise less than half the amount needed to pay for a nurse’s pay increase. We can no longer rely on public generosity to make the difference, and I therefore believe that we must step up and see hospice care not as a charitable extra but as an integral part of the NHS. That is what it needs to be, otherwise we have failed.
I am ever mindful of the seven-minute time limit, Madam Deputy Speaker. If we cannot supply children’s hospice places with specialised staff, we are failing, and we cannot afford to accept failure. The Minister is a good lady, and she believes in hospices. I know she will respond positively, but I want to ascertain how we can do better for palliative care hospices, not in the next budget round but starting here and now. There is a consensus on wanting it to happen, and I believe the Minister and the Government should ensure that it does.
Members have been so positive in talking about the contribution of their local hospices, which ought to be regarded as a very positive, uplifting thing, even though they sometimes have a negative association. When we speak about our hospices, we ought to reflect more on their huge positive contribution to the community. That is certainly the feeling I have had when visiting Bolton Hospice, Wigan and Leigh Hospice and Derian House Children’s Hospice. It is not just the institutions themselves but the staff, including the doctors, the nurses and the volunteers—so many people make a positive contribution right across the organisation. That really drives the fundraising; the vast majority of the hospice movement’s funding is from the charitable sector, with people giving of themselves because they believe in their local hospice. That is immensely important and we ought not to be challenging that relationship with the local community. That takes us immediately on to the other aspect of the funding: the part that local authorities and the NHS give.
When we are going through a difficult time in the economy, it is more difficult for people to give money. Some parts of the country are wealthier and perhaps find it easier to donate to the local hospice, whereas other parts of the country are poorer and perhaps have been hit harder in recent years. Covid and the lockdowns hugely disrupted the ability of hospices to fundraise. We hear of colleagues doing a marathon, skydiving or undertaking all sorts of other activities that so many people around the country do to contribute to their local hospice, but such things were not possible for such a long time. It takes a while for coffee mornings and so many other activities that hospices do to be organised again and for people to get back into that routine of coming along to support their local community events.
That is why it is especially important for national and local government, the NHS and, since 2022, when the Health and Care Act 2022 put them on a statutory footing, the integrated care boards to play their part—this is their responsibility. As was pointed out earlier, the ICBs not supporting the hospice movement in the way they ought to in the short term, because they are under immense financial pressures themselves, will create problems for the wider system. It will create problems for not only the hospices, but the local NHS if hospices cannot continue in the short, medium and longer-term to support their local communities.
A big question that has come out of this debate is about the NHS, which is immensely important, and something that is at the heart of the creation of the ICBs: the ability to have the right care for the community that is represented by the ICB. How do we bridge that divide between the NHS and that local responsibility of the ICB—how do we meet that challenge? Can the ICBs do this or does the Minister have to intervene?
Any of us with friends or family who have gone through end of life care will know exactly how the hospice movement plays such an important part in ensuring that death is dignified and dealt with properly, and that the wider family considerations are at the heart of the way in which hospices support people in that position. This is about not just the bricks and mortar of those hospices, but their work in the community; what they do in people’s homes; how they offer domiciliary support; and how with a good plan, agreed between the various agencies of our local health services, death can be dignified and an experience that is entirely fitting, bearing in mind the obvious sensitivities that exist around this issue. We do not talk enough about death in modern society. We rightly talk a lot about sexuality and sex, but we seem to talk more about that than we do about death. The Victorians did it exactly the other way round, being obsessed with death and never talking about sex. We need to get the balance right and talk frankly about death.
As my hon. Friend the Member for Darlington said, this evening is not a time to debate assisted dying—assisted suicide, as I would call it—but it is a time to talk not just about the invaluable contribution of hospices, but the future of our hospice movement and how we strike a balance between the need to maintain their independence, flexibility and character, which reflects the local community they serve, and the support that it is incumbent on the NHS and central Government to provide, especially in respect of commissioned clinical services. That is where the interplay comes between the independent voluntary sector and those vital statutory services—the clinical ones—that government has a duty to provide and the NHS has a duty to support.
I am particularly lucky as the local hospice that serves Swindon and the north and east of Wiltshire is situated almost next door to where I live in my constituency, in Wroughton. Prospect Hospice was founded in 1980, and has grown and thrived due to the generosity and good will of our local community. Some 30% of its income comes from fundraising appeals and activities. Another 31% comes from profit made by its charity shops, which exist throughout the length and breadth of our area. We have many in Swindon; in fact, a new one opened in one of our shopping centres only a few months ago that is already doing very well and serving its local community admirably. Some 11% of the income comes from legacy gifts. I am glad legacy gifts were mentioned by my hon. Friend the Member for Darlington (Peter Gibson), because they are vital. Together with other investment income, the amount raised in those ways comes to about 75%, with about 25% coming from the statutory services provided by ICBs.
We have all talked about the pressure of inflation, which is a reality for Prospect Hospice as well. Costs have increased significantly and the sad challenge we have faced in our hospice is that we have had to halve the number of beds, from 12 to six, and close the day therapy unit. That unit was invaluable. We very much miss the volunteers who worked in it and the support it gave people at end of life. In common with other hospices, covid wreaked havoc on the fundraising ability of Prospect Hospice; last year, it was left with a shortfall of just over £1 million. With the best will in the world, it is getting very difficult to make up that shortfall. This debate is important not just for Prospect Hospice, but for Julia’s House, the children’s hospice serving Wiltshire and Dorset, based in Devizes, which I visit very often. I know the benefits for children who were my constituents.
In this debate, we are talking not just about fundraising efforts, but about the involvement of volunteers in the service. Such involvement brings huge fulfilment and allows many thousands of people to make a difference by offering their time and talent. None of us wants to lose that, but a sense of reality is needed on the funding of commissioned services. There is no doubt that the Government have moved in the right direction—we have moved leagues in the last 10 or so years. The support that the Government gave to the hospice movement during covid was admirable. The introduction of the statutory duty, which we saw for the first time in the Health and Care Act 2022, was a signal moment when the hospice movement came of age, and end of life and palliative care was recognised, quite rightly, as an integral part of the way in which we provide and commission healthcare in this country.
My local ICB has set up an end of life alliance, which is good. However, more work needs to be done to ensure that the coming together of services around patients—clients—results in an avoidance of duplication, rather than the other way around. We need an acknowledgment that without hospices, such as Prospect Hospice, we will fail thousands of people who have come to rely upon this invaluable service.
There is much more that I could say. I pray in aid the excellent submissions and remarks made by right hon. and hon. Friends and Members. We are making a unified clarion call that we want to see our hospice movement thrive. That cannot happen without the input of Government and local health services.
Everyone should receive appropriate and dignified care, personalised to their individual needs, as they approach the end of their life. Hospices are central to delivering that care, including LOROS hospice for adults, based in Leicester West, which provides care to my terminally ill adult constituents, and the fantastic Rainbows hospice for babies, children and young people, located in my Loughborough constituency.
Since becoming an MP, I have visited Rainbows hospice on a number of occasions and seen at first hand the professionalism and dedication of its staff, who provide the highest levels of care to around 300 of the estimated 1,739 children and young people with life-limiting conditions in Leicester, Leicestershire, and Rutland, as well as their families. Rainbows also cares for hundreds more babies, children and young people with serious and terminal conditions across the wider east midlands area, providing support at its hospice in Loughborough, as well as in local hospitals and at home.
Rainbows is particularly concerned about the access of children and families to round-the-clock end of life care at home, provided by nurses and supported by advice from consultant paediatricians specially trained in paediatric palliative medicine. I am told that only a third of local areas in England are meeting the required standards in this area. Rainbows has informed me that in Leicester, Leicestershire and Rutland there is no 24-hour end of life care available at home, other than that based on goodwill provision from the Diana team. Therefore, in October 2023 Rainbows launched its hospice at home service, which it provides jointly with community nursing teams. However, there are no paediatric palliative consultants across the east midlands and no funding available to support this essential service. As such, Rainbows is currently paying for remote support from a consultant in another region.
Rainbows also funds two clinical nursing specialists working at the Leicester Royal Infirmary. In addition, it provides paediatric palliative care single point of contact, which is a pilot and is currently funded by the Paediatric Palliative Care Network, although the future of this funding is not guaranteed. Furthermore, Rainbows provides end of life care, symptom control and short breaks at its hospice in Loughborough. Its therapists offer support in the hospital, and provide ongoing bereavement support to families.
I am told that in 2024-25 it will cost Rainbows £12.1 million to provide its services. Over the same period it will receive roughly £1.7 million in statutory funding, which works out to be around 14% of its costs—enough to keep it open for only seven weeks. It will also receive £99,000 from Leicester, Leicestershire and Rutland integrated care board and £1.4 million from the children’s hospice grant for all five counties. This income totals £3.2 million, leaving a shortfall of £8.9 million, which Rainbows has to try to find itself.
Furthermore, although Rainbows has been told that it will receive the children’s hospice grant for 2024-25, the ICB has still not confirmed whether it will receive the funding in subsequent years. Together for Short Lives has also highlighted that, while ICBs and hospices are now clearer about their process for distributing the grant—thanks to the confirmation from the Government —it still remains unclear when and how hospices will receive the funding from ICBs and to what extent NHS England will hold ICBs to account in ensuring that the money is paid out. As a result, at the moment hospices do not have the reassurance of a long-term NHS funding plan, so I seek clarification from the Minister on those points.
Although Rainbows is fantastic at fundraising, its current position is simply not sustainable, particularly given that the number of children with life-limiting or life-threatening conditions is increasing. If we restrict the services that existing hospices provide by not supporting them with adequate funding, the provision will have to be found elsewhere, and responsibility will likely fall on the state. I therefore encourage the Government and NHS England to accept Together for Short Lives’ recommendation to review children’s palliative care funding going forward and to fill the £295 million annual gap in NHS spending on children’s palliative care in 2024-25. This should either be met centrally by maintaining ringfenced NHS England funding beyond 2024-25, or by setting out a framework under which ICBs are required to provide sustainable funding.
If urgent action is not taken, I share Rainbows’ concerns that more seriously ill children and their families will be denied choice and control over their palliative and end of life care.
In conclusion, I ask the Minister not to change a single atom of LOROS hospice or Rainbows children’s hospice, because they both provide excellent care. However, I urge her please to work alongside them as much she can and to get the ICBs, in particular, to deliver on the funding that was mentioned earlier in the debate.
I thank my hon. Friends the Members for Hastings and Rye (Sally-Ann Hart) and for Darlington (Peter Gibson) for organising and securing this very important debate; I am hugely grateful that they have done so. It is clear from the amount of people who have taken part in the debate that hospices are held in great affection not only in our hearts, but in the hearts of our constituents, both on the Isle of Wight and across the country. Clearly they are a comfort in times of extraordinary difficulty and death, not only for those who are dying but for their families. These are very difficult times, and hospices provide succour, professional support and, probably above all, love and comfort.
On the Island we have the Mountbatten hospice. I know that my hon. Friend the Member for Eastleigh (Paul Holmes) spoke about Mountbatten. I will develop some of points he made and echo them. The Mountbatten hospice in Newport is one of our most cherished institutions on the Island. I thank all the people who work there and support it for the fantastic work that they do caring for people on the Isle of Wight. I pay special tribute to the head of our hospice, Nigel Hartley, one of the most impressive people we have on the Island and one of my favourite Islanders. He was a concert pianist before he started looking after people in the London Lighthouse clinic in the relatively early days of the AIDS pandemic. He learned to care for people at that time before moving eventually to the Island, and bringing a unique sense of occasionally eccentric but organised, highly competent and very loving leadership to that institution. We are hugely lucky to have somebody like Nigel.
On the hospice’s behalf, I will raise a few issues and get some clarity from the Minister. I know that I am not the only one saying that, but for Back Benchers there is clearly strength in numbers. Many of the issues that I will raise have been raised already, but I want to put them on the record. I do not want the NHS to take over hospices. We need to respect the charitable status of our hospices because it gives them strength. They are so directly related to and engaged in our communities, but we do need the NHS to pay its way in relation to our hospices. In the last two years, the Mountbatten hospices on the Isle of Wight and in Eastleigh have had cash increases from the NHS of under 2%, if I understand the figures correctly, and under 3%. Their cost increases have been much higher.
We are putting our hospices under very considerable financial pressure, so we are having to dig deeper into fundraising or look at ways of making cuts. That is not acceptable. We are not asking for the NHS to step in, but we are asking for the NHS to pay its way and, if it is using hospices, to give them sufficient funding. Otherwise, the burden of looking after the NHS’s responsibilities, for want of a better term, is falling heavily on folks in the constituency of my hon. Friend the Member for Eastleigh and on the Island. We have our major fundraiser for the Isle of Wight Mountbatten hospice on 12 May. Walk the Wight is a fantastic event. Last year it raised £460,000, but running a hospice is expensive and when it is dealing with below-inflation increases from our ICB, that is problematic.
I will raise one other issue. My hon. Friend the Member for Eastleigh and I had two conversations with the ICB last week, one on the Isle of Wight Mountbatten hospice and the Eastleigh Mountbatten hospice, and the other a shared conversation with Hampshire colleagues about the work of the ICB. It is in special measures. We were told that somehow that was a very good thing. Clearly there is pressure on its expenditure and budget, and its management decisions in relation to that budget. I am concerned that when ICBs are in special measures, cutting funding to hospices—as opposed to acute services, which are hugely expensive—and potentially to primary care is seen as a quick win. Yet effective spending on primary care actually eases pressure on acute services, as does effective spending on hospices.
It is about the NHS paying its way; I am not talking about it taking over the system. Giving a little more funding—near inflation increases—to hospices enables them to perform a hugely important moral and medical duty not only to those who are dying but to their families. Hospices not only support people in the hospice; increasingly now my Mountbatten hospice—I suspect this the same for the hospice in Eastleigh—looks after people as they near death in their own homes.
On behalf of my hospice, I ask that we ensure that the ICB covering Hampshire and the Isle of Wight is doing its job effectively and properly. I think it fair to say, without being ungenerous towards those people, that some of us have concerns about some of the decisions being made. Can we ensure that the ICB is managing its affairs well and that, in so doing, it is giving support to hospices both in Eastleigh and in Newport and the Isle of Wight? Our hospice, the Mountbatten hospice, so badly needs it.
There are few charities more cherished by people in West Dorset than Weldmar Hospicecare. The Weldmar hospice in Dorchester must be one of the most—if not the most—respected and cherished hospices in Dorset as a whole. Most of my constituents will have had a family member or known someone whom Weldmar has looked after at the end of their life. That is why the hospice is so dearly loved not just in Dorchester or West Dorset, but across the county. The Weldmar nurses looked after my aunt in her final days some 15 years ago, and I am eternally grateful to them for all that they did for her and continue to do for friends of people I know, not just in the Dorchester hospice but through the community nursing team.
Weldmar is Dorset’s largest independent charity, and it has provided specialist end of life care since 1994. Over the past three decades it has looked after 24,882 patients, both in the community and in its specialist in-patient unit in Dorchester. The care is free of charge, and last year alone 1,745 families benefited from Weldmar’s vital care and support. That is undoubtedly why the community feels so passionately about our hospice and, with it, the innovations and fundraising successes of the incredible Weldmar team. However, as is the case for many hospices, in order to sustain itself and keep its services running, Weldmar needs to raise £27,200 every single day, on top of its NHS income.
In January 2024 the APPG on hospice and end of life care published its “Government funding for hospices” report. It found that, despite statutory guidance,
“ICB commissioning of hospice services is currently not fit for purpose”,
and the value that the services provide individuals and the wider health system is “at risk.” The Government announced additional funding for hospices during the coronavirus pandemic, and in a Westminster Hall debate on 17 January this year my hon. Friend the Minister set out the wider financial support available to hospices, including the energy bills discount scheme, eligibility for a reduction in VAT from 20% to just 5%, and the £1.5 billion of additional funding that NHS England released in 2022 to provide integrated care boards with support for inflation.
It is my opinion that palliative and end of life care needs to be given much greater priority—as it has in many other areas—in the integrated care partnership strategy. We want to ensure not only that we sustain Weldmar and other provision long into the future, but that we consider and support more end of life care. Places such as Lyme Regis, where travel to a hospice is long, would greatly benefit from additional provision.
In summary, I am contributing to the debate so that it is known and understood that we in West Dorset cannot speak highly enough of our hospice; we value the Weldmar team so much. I ask the Minister and the Government to give consideration to the matters that we have been debating this evening.
In 2003, when I was reporting for BBC South Today, I was sent to the official opening of Julia’s House in Corfe Mullen, Dorset. Little did I know that the first person I would meet there was my mother, who sadly died in 2019. Her instinct for caring and compassion drew her to that remarkable hospice for children like a moth to a flame. I was immediately struck by the wonderful environment that the dedicated staff had created: a desperately needed service to provide practical and emotional support to families caring for a child with a life-limiting or life-threatening condition was born.
Julia’s House is one of more than 200 adult and children hospices that care for and support about 3,000 patients a year. They work hand in hand with local health and care services, taking the pressure off the NHS. As we have heard, hospices are mainly funded through charity: on average, around two thirds of the income for adult services is raised through fundraising. Alarmingly, for children, that figure is four fifths. In 2022, for the first time, as we have heard, the Health and Care Act introduced a legal duty for integrated care boards to commission palliative care services that meet the needs of the local population. However, a recent report by the APPG on hospice and end of life care, co-chaired by my hon. Friend the Member for Darlington —again, we have heard this in the Chamber, but I make no apology for repeating what colleagues have said—found that despite that legal requirement, funding from ICBs varies significantly across the country.
Today, the sector is under significant financial pressure: Hospice UK estimates that the sector is on track for a £77 million deficit for the 2024 financial year. Nowhere is that pressure more real than at Julia’s House. Its chief executive, Martin Edwards, said that over 90% of its annual running costs were met by fundraising; the Government’s contribution remains low, at only 8%. That over-reliance on people’s generosity—which is enormous—will see Julia’s House face a budget deficit of £1 million this year. [Interruption.] If SNP Members could refrain, I would be grateful. This dire situation is exacerbated by the ending this year of a shared grant of £25 million from NHS England. At its two sites, Julia’s House cares for 176 families across Dorset and Wiltshire. Mr Edwards said that it was coping with children with more complex needs, requiring more staff and putting more pressure on budgets. The care provided is intensive, with a family being supported for up to five years following the death of a child.
As one might imagine, palliative care comes with all kinds of issues, not least medical, emotional and financial. Who do you turn to for help and advice? How does the patient wish to be cared for? Who supports the carer? This is where a remarkable charity, Lewis-Manning Hospice Care, comes into play. Its chief executive, Clare Gallie, told me that its team comes to the patient’s home and, in effect, responds to the needs of the patient and their family by signposting them to relevant services, from treatment to transport. Importantly, it is the need of the patient that is most significant: for example, if their wish is to die at home, everything possible is done to ensure that that happens. Importantly, this free service is proactive rather than reactive, anticipating what the patient and the family want, reducing crisis at the end of life, and saving the NHS a lot of money by freeing up GPs’ time and negating the need for a hospital. A pilot scheme being run in a part of Dorset has already saved the NHS £140,000 in April alone. Imagine if this scheme was rolled out across the country; it would save the NHS millions.
Let me conclude. There is no doubt that there is a need for more Government funding for hospices, independent—fiercely so—as they are, but the funding disparities, as we have heard from virtually every speaker, must be looked at. Yes, I hear the Government say that this is another call for money and there are many other demands, but well-funded hospice care would safeguard this very effective and necessary sector, which cannot live on charity alone, and nor should it.
While it is important to recognise the great work done across the eastern region by East Anglia’s children’s hospices, in the Great Yarmouth and Waveney areas, as represented my right hon. Friend the Member for Great Yarmouth (Sir Brandon Lewis) and me, there is at present a hospice vacuum. Throughout the rest of Suffolk and Norfolk, there are locally based hospices well embedded in and providing great services for their communities.
The good news is that plans are being carefully prepared to fill this vacuum and this void. A local partnership is evolving to build a local hospice led by St Elizabeth hospice, including the local NHS, councils, a community interest company, volunteers and fundraisers. For it to be successful, to open the hospice and then to run it, the national Government must join this partnership, and I hope my hon. Friend the Minister, who is currently not in her place, will in her summing up accept this invitation. The Waveney and Great Yarmouth areas desperately need a hospice. We have an ageing population and pockets of deprivation, and as Chris Whitty has highlighted, there are acute health inequalities in coastal communities that a hospice can help level out and remove.
As I have mentioned, a well-researched case for the hospice has now been prepared, though it is important to recognise the work done by so many over the years in supporting those in need of end of life care and their families—from the late Margaret Chadd, who founded East Coast hospice and had the vision of building a hospice on land bought at Gorleston, to Roberta Lovick, who founded the Louise Hamilton Centre, from which such great support is provided to patients with life-limiting conditions and their families; the James Paget University Hospital, where the Louise Hamilton Centre is based; and East Coast Community Healthcare, the Lowestoft-based community interest company that, in partnership with St Elizabeth, operates six specialist beds in Beccles Hospital, as well as providing care both in people’s homes and in care homes.
Building on the work of these local people and organisations, a framework is emerging through which a local hospice can be built. The cornerstone of this is, as we have heard, the Health and Care Act 2022, which sets out the legal requirement for ICBs to commission palliative and end of life care. The Norfolk and Waveney ICB has responded by carrying out a review of palliative and end of life care. This was completed last autumn, and it highlights the need for nine urgent and six medium to long-term actions. Last March, St Elizabeth hospice merged with East Coast hospice, and straightaway set about conducting a feasibility study into the viability of building up hospice facilities on the Gorleston site.
The study has just been completed, and the conclusion reached is that a hospice should be built in stages. Expressions of interest are now being invited from architects. That is an exciting landmark for which so many people have strived for many years. St Elizabeth is confident that it can successfully fundraise for a hospice capital appeal, but it is for the ongoing revenue cost of providing core clinical services for a full in-patient unit, as well as outreach community services, that national Government support is required. The Norfolk and Waveney ICB—indeed, all ICBs—need central Government support and a fundamental rebalancing of national policy, so that they can meet the projected growth in demand for palliative care.
It is good news that after so many false dawns over so many years we now have a coherent and well thought-through plan for filling the hospice void in the Waveney and Great Yarmouth area, but while we should be sanguine, we should also be realistic. We are not even at the starting point of the rest of England, as we have heard from other colleagues who have a hospice up and running—we do not. That is why the Government need to join the partnership that has evolved, and support Norfolk and Waveney ICB so that it can commission hospice services on a long-term, multi-year basis. I urge the Government to join us on that exciting journey.
Most of us hope we never need to experience hospices at first hand, but when we do experience them because a loved one needs their care and support, we realise how important and valuable they are. I am incredibly proud and privileged to have two exceptional hospices in my constituency. Mount Edgcumbe hospice, which is part of Cornwall Hospice Care, was opened in 1980 and was Cornwall’s first hospice. It has recently been rated as outstanding by the Care Quality Commission, which highlighted the caring and personal nature of the service provided by the staff, who are responsive to the needs of the patients. I did not need the CQC to tell me that. Indeed, my family and I know that first hand, because back in 2007 my mother died from cancer at Mount Edgcumbe hospice. She lost her second battle with breast cancer, and the care and support that we received as a family was outstanding. I place on record my huge thanks to them.
I am also greatly privileged to have Little Harbour, which is part of Children’s Hospice South West in my constituency. It opened in 2011, and its state-of-the-art facilities are some of the very best in any children’s hospice in the country. Having visited a number of times, I can testify that the atmosphere there is truly amazing, and one cannot help but be moved by the place. It supports children and young people up to the age of 21, including the youngest babies who need its care. The CQC praised the staff for their personalised care and support. That reinforces the important point that it is not just about the bricks and mortar or equipment that the hospices provide; it is the staff and volunteers who work there who make our hospices the amazing places they are.
We are lucky in mid-Cornwall to have those two excellent examples out of some 200 hospices across the country. Both are supported by amazing people—volunteers, fundraisers and donors—who play such an important part in ensuring that those hospices can continue. It is not just about the care that the hospices provide to the people who are sick; we have heard many times in the Chamber today about the wraparound care that hospices provide to families and friends, which is so important and valuable.
I believe that it is best for our hospices to stay in the independent sector as charities. They gain most of their support from the public; I have seen that time and again for the two hospices in my constituency. Being independent from the NHS gives them a special place in our communities. People feel a great connection to them. They feel that they have a personal stake in the work that hospices do, particularly if they engage in fundraising for them. I fear that that would be lost if hospices were effectively nationalised. It is so important for our hospices that we continue that situation.
However, the Government need to better recognise the important role that hospices play. We have heard several times about the postcode lottery for NHS funding for our hospices. I tell the Minister that we need to address that. Cornwall Hospice Care, I am told, has the second lowest funding of any hospice charity in the country. Just 9% of its funding comes from the NHS, which means that 91% is raised through fundraising, donations and legacies. That cannot be right. I am all for donations playing a significant part in the funding of hospices, but the NHS should step up, particularly in Cornwall, and provide more funding to our hospices. We need to look at regional variation. Funding must be based on need for hospice facilities in each region. I urge the Minister and the Government to look at what more can be done to provide a level playing field on NHS contributions to our hospices.
We have all heard that the past few years have been difficult for our hospices, with the growing pressure of rising costs and demand. One thing we could do for the hospice sector is provide more certainty about funding through multi-year funding settlements, so that hospices can plan far better, and at least know what funding is coming from the NHS. With that certainty, they could plan accordingly.
In summing up, I place on record my huge thanks to those in every hospice in our country for the incredible work that they do—to the paid staff, the volunteers and the fundraisers. They work so hard, and are so generous in providing this vital service to our communities, particularly the two hospices in my constituency. There has been real consensus across the House this evening. Although we value and celebrate all the work that hospices do, more needs to be done to provide them with fairer funding, so that they can continue to play a vital role for our communities.
Members who have spoken in the debate fall into broadly two camps. First, there are those who have had personal experience of hospices through family members who have suffered and needed those facilities. Their speeches have come across amazingly, with real pathos and depth, and I commend all hon. Members who have spoken so personally about their journeys. Secondly, there are Members like me who have not had personal experience of hospices but recognise the importance of what they do. If I may, I will talk about two important hospices for my constituency.
Thames hospice—it was first known as Thames Valley hospice—was officially opened by Her Majesty the Queen in November 1987 on Hatch Lane in Windsor. It has been serving my constituents and others in Berkshire since that time, and has shown amazing strength of character in supporting so many people.
With the Minister in her place, I contend that, as we have heard numerous times, we need to refine the funding models for hospices. In my view, the NHS needs to cough up a bit more support, but this is also about timing. Thames hospice is awaiting its funding settlement for 2024-25 from the ICB, with barely two weeks to go, so the issue is how much can be funded by the taxpayer, and about being notified of funding up front. That is really important, because it means that hospices can plan ahead for the year.
Thames hospice, having provided care for all that time, was in 2017 granted planning permission to build a new £22 million, state-of-the-art facility on a brand-new 8 acre site by Bray lake, just outside Maidenhead in the Royal Borough of Windsor and Maidenhead. That is important, because through the ICB, it serves many constituents in the east of Berkshire, including in Bracknell. I know of many constituents who have had fantastic care there. In January 2019, work began on construction. I visited earlier last year, when the site had been built. It was incredible, with so many fantastic staff, a café and dedicated services.
Thames hospice supports about 2,500 patients and their loved ones annually with high-quality medical and emotional support. This is all about making people’s lives easier, and making sure that their remaining time on earth is as dignified as possible. We should not underestimate or put a price or value on that. That is why we have a responsibility to fund hospice care properly.
As for the future, by 2030, 15 million people in the UK will be over 65 years old. Also, the number of young people with life-limiting neurological conditions has increased by 64% in the last 10 years, and the incidence of cancer in people under the age of 50 rose by 79% between 1990 and 2019. We should think about that. Those are really serious figures, and they mean that the demand for hospice services is likely only to increase over time.
In the past year, costs at Thames hospice have increased by 9%, with no commensurate increase in Government funding. We have heard something similar from other hon. Members this evening. To put a figure on it, Thames hospice has to raise £38,000 every day to subsidise the costs of care. That will increase to more than £50,000 a day by 2030, based on a 4% increase, year on year—and that is without even considering investment for growth in the future. The picture is similar elsewhere. To put it in perspective, Thames hospice needs £18.5 million for 2,500 people every year. That is really stark. As I mentioned, Thames hospice is the end of life care provider for the Frimley integrated care board in east Berkshire. It is of direct relevance to my constituents. I cannot thank the staff and the directors at Thames hospice enough for what they do.
I want to mention Sebastian’s Action Trust in Crowthorne, which is important because it provides palliative care for children aged between zero and 18 and supports their families. A key part of the support that the brilliant Sebastian’s Action Trust provides is memory-making support for the families who use the facility. It also continues to support the families once the child goes to end of life care. Losing a child is devastating anyway, but the fact that Sebastian’s Action Trust provides such brilliant support to families, even after that life event, is remarkable.
The message is clear: we need more funding. We must establish better funding models. We cannot rely so much on charities and donations. We must make sure that funding is provided up front. This is a life-and-death issue. Hospices take pressure off the NHS. The facilities at Thames hospice are state of the art; we can sweat the asset an awful lot more. Perhaps the underused capacity of hospices could sometimes be hired back to the NHS.
I will conclude now. Madam Deputy Speaker, thank you for the opportunity to speak this evening. We need more money, Minister, and I know you will give it to us.
In the context of the spring Budget, at the start of a new financial year and with a general election on the horizon, this is an incredibly timely debate. It also coincides with the publication of Hospice UK’s report, which estimates a deficit across the UK hospice sector of £77 million, and for Scotland of around £16 million, for the financial year 2023-24—perhaps the worst financial outturns for the sector in nearly 20 years. The same report suggests an 11% increase in payroll costs to hospices, representing around £130 million. People who work in hospices have every right to expect a decent competitive salary that allows them to ensure that their own households are safe and warm, but that is a challenge being driven by the wider cost of living crisis, which is itself having an effect on the hospices.
Heating, food, drink and other consumables are not discretionary expenditure. Hospices must run 24 hours a day, seven days a week. They have to maintain a comfortable temperature. They have to provide nutritious, high-quality food. All that comes at a time, as the hon. Member for Bracknell (James Sunderland) just said, when the demand for such wonderful care has perhaps never been higher. People are living longer and dying at later ages. That means an ever-greater need for palliative care. The Office for National Statistics estimates that in Scotland an additional 10,000 people a year might be expected to seek access to palliative care by 2040.
We have heard some very moving individual testimonies from Members across the House. The hon. Members for Coventry North East (Colleen Fletcher), for West Dorset (Chris Loder) and for Leeds East (Richard Burgon) all spoke of personal experiences of the hospice movement. The hon. Member for Birmingham, Erdington (Mrs Hamilton) made some very worthwhile points about hospices being a place where people can really live the final days of their lives. The hon. Member for Eastleigh (Paul Holmes) has been very passionate about the issue for reasons he explained about his former chief of staff. We echo the condolences that have been paid.
I am incredibly grateful for the love and care shown to my good friend Melanie, who passed away in the Highland hospice just over a year ago. I was proud to be one of the runners yesterday in the London marathon in her memory and in aid of that hospice. I congratulate the hon. Members for Walsall North (Eddie Hughes) and for Enfield, Southgate (Bambos Charalambous), who ran for their local hospices, and the hon. and learned Member for Eddisbury (Edward Timpson) and the hon. Member for Colchester (Will Quince), who also took part in the debate and ran for other worthy causes. I understand that in a few weeks’ time, the hon. Member for Lancaster and Fleetwood (Cat Smith) will take part in the 40-mile Keswick to Barrow walk through the Lake district in aid of St John’s hospice in Lancashire. I pay tribute to the work of the Marie Curie hospice in Glasgow, which has provided care at the end for other friends, particularly some I have known through the SNP. In recent weeks, close friends have had reason to be grateful to everyone at St Vincent’s hospice in Renfrewshire in very sad and difficult times.
Those personal experiences are what help to inspire the incredible generosity that allows the hospice movement to continue its work. As we have heard, around two thirds of adult hospice income comes from voluntary fundraising. At the same time, the Sue Ryder charity estimates that the hospice sector actively saves the NHS nearly £600 million a year by freeing up bed space, or even avoiding hospital admissions in the first place. The hon. Member for South Dorset (Richard Drax) gave some examples of exactly how that can work.
From all the evidence we have heard today, it seems that the current model for hospice funding is increasingly unsustainable. Some have even used the word “existential”. Healthcare is devolved, so it is not for the Scottish National party to determine how the Minister or her shadow on the Opposition Front Bench prioritise their spending decisions, but if the UK Government were to find new or additional funding for the hospice sector in England, that would have consequentials for the budget available to Scotland’s Government. The current 2024-25 budget for Scotland provides over £19.5 billion for NHS recovery, health and social care, which is a real-terms uplift despite the austerity we are facing.
The Scottish Government have also established a new strategy steering group to oversee the development and delivery of a new palliative and end of life care strategy and associated work programmes. That work aims to ensure that everyone in Scotland receives well co-ordinated, timely and high-quality palliative care, care around death, and bereavement support based on their needs and preferences, including support for families and carers, to ensure that Scotland is a place where people and communities can come together to support each other, take action and talk openly about planning ahead, serious illness, dying, death and bereavement.
There are other actions that the UK Government could take that would continue to help hospices across these islands. Energy costs remain stubbornly high, but the Government are bringing many of their energy support schemes to an end. As I said earlier, energy is a fixed cost for hospices, not an area in which savings can readily be made. In this context, the hon. Member for Darlington spoke about the situation of Ardgowan in Inverclyde. Many of the reforms to the energy market and energy price support that the SNP and others have called for would make a difference in the hospice sector, as in many other parts of the economy and society.
Regrettably, the Government’s approach to immigration is also having an impact. How many nurses, doctors and other specialists have arrived in the UK—some, perhaps, on small boats or by other irregular means—but have been denied the opportunity to work? How many more are not even coming in the first place now that the Government have decided that they cannot bring family members, or are massively increasing the costs and thresholds for visa applicants? How many might have come from Europe, or might have stayed, had it not been for Brexit? Every country in the world is having to face up to the legacy of covid and the impact of conflict in Ukraine and elsewhere, but the UK Government have been making deliberate policy choices in many of these areas that are exacerbating those challenges rather than mitigating them, and the impact of that could have long-term consequences.
If the hospice sector does have to make radical savings and scale back service provision, the costs of palliative care and supporting people at the end of life will still have to be met; they will just have to be met elsewhere, which could mean increased costs for the NHS, for social services or, worse still, for individual families and households—not just in financial terms, but in emotional and psychological terms—if they are denied that support at the end. People will always want to give and to raise funds for hospices, but if we want collectively to be able to rely on hospices to be there for individuals and families when they are needed most, we cannot expect the hospice movement simply to rely on the good will and efforts of voluntary fundraisers.
A number of important suggestions have been made during this debate, in the motion, and in the evidence given by hospices themselves and by the all-party parliamentary group about how the Government can put the sector on a more sustainable footing for the future. I hope that the Minister will be able respond positively, in the spirit of consensus that we have observed this evening, and that the Government will work with their counterparts and with service providers across the United Kingdom to ensure that the hospice sector is given the support that it needs so that everyone who works for hospices can focus on what they do best, and continue to provide love and care for those who need it at the end of their lives.
I thank my hon. Friends the Members for Enfield, Southgate (Bambos Charalambous), for Coventry North East (Colleen Fletcher), for Birmingham, Erdington (Mrs Hamilton), for Hammersmith (Andy Slaughter) and for York Central (Rachael Maskell), my right hon. Friend the Member for Hayes and Harlington (John McDonnell) and my hon. Friend the Member for Leeds East (Richard Burgon), as well as the hon. Members for Colchester (Will Quince), for Southport (Damien Moore) and for Eastleigh (Paul Holmes), the hon. and learned Member for Eddisbury (Edward Timpson), the right hon. Member for Basingstoke (Dame Maria Miller), the hon. Members for North Devon (Selaine Saxby) and for Bolton West (Chris Green), the right hon. and learned Member for South Swindon (Sir Robert Buckland), the hon. Members for Loughborough (Jane Hunt), for Isle of Wight (Bob Seely), for West Dorset (Chris Loder), for South Dorset (Richard Drax), for Waveney (Peter Aldous), for St Austell and Newquay (Steve Double) and for Bracknell (James Sunderland)—not forgetting, of course, the hon. Members for Strangford (Jim Shannon) and for Glasgow North (Patrick Grady). I also congratulate all those who took part in the London marathon; I was not one of them.
Let me now turn to the subject that we are here to debate. End of life care is a subject that has touched the lives of most of us. It is a time when our loved ones, and the family and friends who surround them, can be at their most vulnerable and in need of the greatest support. Managed well, it can be a healing time for families to come together, but managed badly, it can leave deep and traumatic scars. I need only look at the experience of my family—the experience that I had during the deaths of my parents to know how this bears out. It was 30 years ago that I lost my mum to ovarian cancer—I was 19. Her final hours were spent at the end of an old Victorian ward with the curtain pulled around her, and she was in immense pain and suffering, which I remember vividly to this day. That was incredibly hard for our family to manage.
More recently, in 2022 I lost my dad following his own battle with cancer. Unlike my mum, he died at home, with my wife and I taking him in for the last few months of his life, and we were supported by a superb army of care staff. In fact, when the time came for my dad to decide whether he wanted to go to the local hospice, Willow Wood, or stay at home with us, the final words that he communicated to me and my wife were, “Stay here.” I come back to the point made by the hon. Member for Colchester about how we talk about death, how we deal with death and the end of life, and the fact that many people want dignified end of life services at home; we should do all we can to facilitate that.
In my dad’s case, the whole system worked. It came together in a way that, as I know from my constituency casework, it rarely does. The hospital, social services, Macmillan, Marie Curie, the GP, the pharmacy, the district nurses and Willow Wood hospice all worked together seamlessly, and my died passed away in comfort, peacefully and surrounded by those who loved him most in the world. We have heard from my hon. Friend the Member for Coventry North East and other Members that we have to get the end of life choice right for people, and hospice at home plays an important role in that.
The sharp contrast between my parents’ journeys emphasises to me, in a deeply personal way, just how impactful end of life care can be. For all of us, death should be about choice and what we want, and we should leave this planet with dignity. We talk about the integrated care boards, and the clue is in the name: they should be integrated, with both social care and other services, including hospice services. In my dad’s case, that worked, but as we have heard from Members across the House, in too many cases the integration just is not there yet. The Government have rightly devolved money to the ICBs for a specific purpose, but it is not being spent as we would want.
Hospices play such an important part in that deeply personal journey for hundreds of thousands of people and their families every year, right across the country. Working in partnership with existing local systems, hospices ensure that people receive the care that is most appropriate for them, considering all their needs. I pay particular tribute to one of my local hospices, Willow Wood hospice in Ashton, Tameside. The tireless work and dedication of its staff was a vital support when we were caring for my dad in his final days. Those staff showed hospice care at its best, and they have my immense gratitude for all that they continue to do. But they, like so many others, find themselves in a perilous financial position; Willow Wood faces a structural deficit of £750,000 this financial year. Without finding a way to plug the gap, its services will have to be reduced.
There is real pressure on all hospices to generate their own income, with Hospice UK estimating that as much as two thirds of income for adult hospices is generated through fundraising, with some, like Willow Wood, having to raise 80% of their funds themselves. Many hospices do incredible fundraising work, with armies of volunteers finding ever more ingenious ways to keep the money coming in, but with the incredibly hostile economic climate that hospices are finding themselves in, including as a result of energy costs, funds are being squeezed more than ever—[Interruption.] Someone put 50p in the meter; obviously the House cannot afford those costs now!
The sector as a whole is on track for a deficit of £77 million for the last financial year, the worst figures for two decades. As a result, hospices are starting to pare back some of their services. As we have heard, there is also a legal requirement placed on integrated care boards by the Health and Care Act 2022 to commission palliative care services in keeping with local need, and we need to ensure that that funding is passported down to the hospices where they need it. We know that delivery is far from consistent, leaving patients in some parts of the country without adequate services in their own community. The clear pressure on the sector shows no sign of letting up, because we are an ageing population and demands on hospice services are set to increase further, with Office for National Statistics data suggesting that a further 130,000 people will die each year in the UK by 2040.
It is clear that we need proper joined-up supportive policies for the hospice sector. We need to ensure that the money that the Government have ensured is there for the hospice sector gets down to where it needs it: at the hospices themselves. We need to focus on creating a health and care system that is genuinely joined up and has end of life care as part of the health and wellbeing policies for each and every one of us. This can no longer be the taboo subject it once was, and the hospice sector underpins so many care pathways that have a tangibly positive impact on patients and their families. End of life care matters. This current Government will have our support in ensuring that the hospice sector is protected and supported.
Beyond that, I thank everyone who gives palliative and end of life care, as part of hospice teams but also working in the NHS. How you die, how your loved ones die or how you live towards the end of your life, matters. As the hon. Member for Birmingham, Erdington (Mrs Hamilton) said so eloquently earlier this evening, and as all of us here this evening know, that is why palliative and end of life care matters. It matters when that care is provided by the NHS, as it is for the majority of people, and when it is provided by hospices. I emphasise that point, because there is sometimes a misunderstanding, which I have heard a few times this evening. The fact is that most palliative and end of life care is provided by the NHS, whether in hospitals, by primary care or through community trusts. Alongside and in addition to that, hospices do the wonderful work that they do. Recognising the importance of palliative and end of life care, we specified in the Health and Care Act 2022 that integrated care boards must commission these services to meet the needs of their populations.
Some hon. Members have argued this evening for hospice funding to be centralised, taken away from integrated care boards and, I assume, allocated by either NHS England or the Department of Health and Social Care. While I understand their motivation in making that call, I do not agree. We purposefully set up ICBs to understand the healthcare needs of our local communities, to plan and commission services to meet those needs and, in so doing, to reduce health disparities. Our communities and their needs, and the services they already have in place, are different, and rarely is a one-size-fits-all decision made in Westminster the right answer. I stand by a more localised approach, in which there is, of course, variation.
Another source of variation is historical. The hospice movement has grown organically, and the location of hospices has not been planned to meet demographic need, for instance. There are, therefore, inequalities in access to hospice services, especially for those living in rural and more deprived areas. This variation in access to hospice care has to be taken into account by ICBs in the decisions they must make to ensure that people have access to end of life care, whether or not they live in an area served by a hospice.
Will the Minister further clarify one small point? She has made a clear distinction between NHS-provided care and hospice care, but there are many cases around the country where the NHS is funding, in full or in part, specific services from hospices. How would she distinguish between them? Is it NHS care or hospice care if it has been fully commissioned and fully funded by the NHS?
On the NHS providing palliative and end of life care, I have heard a misunderstanding in some speeches, both this evening and on other occasions, that all end of life and palliative care is provided by hospices. It is more mixed. Integrated care boards do, indeed, commission hospices to provide care, but hospices also provide care independently, and NHS services do so, too. These teams also work together collaboratively. That diversity is a strength.
In seeking to address inequalities, ICBs can look to hospices to do more in underserved areas, for instance. At other times it may be more appropriate for them to look to NHS services. It will vary by area, which is one reason why these decisions should be localised, rather than made by somebody sitting in my place saying, “This is how it should be done across the whole country.”
Although I do not agree with centralising hospice funding, I am working on the transparency and accountability of ICBs to their communities and hon. Members, as representatives. That is why I have regular meetings with NHS England leads on palliative and end of life care, and it is why I am pleased to have secured NHS England’s commitment to including palliative and end of life care in the topics discussed at its regular performance meetings with ICBs. It is also why I am pushing NHS England and ICBs to improve the data they collect on the access to and quality of palliative and end of life care.
NHS England has developed a palliative and end of life care data dashboard to help ICBs understand the needs of their populations and then address and track inequalities in access to end of life care. This is progress, but I want the transparency to go further so that we all have the data we need to assure ourselves that our ICBs are commissioning the care that our constituents need.
I have heard the calls for more funding for hospices and the stories of some fantastic fundraising efforts, from the “star trek” night walk and the “Santa sprint” to the magnificent marathon runners who have joined us in the Chamber tonight fresh from yesterday’s London marathon. I congratulate those who ran, and particularly those who did so on behalf of hospices, which is timely for this debate.
That said, I disagree with the hon. Member who said that people running a marathon for hospices is “sad”—it is not; it is a wonderful thing. It is a sign of the tremendous support that hospices have in our communities and that people are willing to choose to fund hospices, not just when the taxman comes along; they are choosing to have a hospice providing services to people in their area. It is a good thing because that fundraising gives hospices an independent funding stream, the freedom that goes with that to serve their communities as they see fit, and the strong ties with their communities and with all those people who fundraise for their hospices.
As hon. Members know, the Government have provided dedicated additional funding to hospices; in the pandemic, when I played a part, we were helping them with energy bills and through the children’s hospice grant, which the NHS has confirmed will go to hospices for this financial year too.
Looking ahead, I fully appreciate the ask for longer-term certainty of funding—of course I understand that. However, funding for hospices, end of life care and many other things beyond the current financial year depend on a future spending review. I am sure that all hon. Members will understand that I cannot pre-empt such a review, and ICBs similarly will not know their funding until that review. Although committing funding beyond the spending review period is not in my power, I am pushing for our healthcare system to encourage and enable more advance planning by individuals to consider and set out what they want at the end of their life. Inevitably, some of us will die in hospital, and for some of us that will be the right place, but given a choice many people would rather die at home. We should all be setting out a plan that includes our preference of place of death and what sort of treatments we do and do not want. As my right hon. and learned Friend the Member for South Swindon (Sir Robert Buckland) and my fabulous health colleague my hon. Friend the Member for Colchester (Will Quince) said, we should talk more about death and plan for it.
To conclude, there are no easy answers to the questions raised this evening—there rarely are. I do not have a pot of money otherwise going unspent for hospices; neither do ICBs and nor does NHS England. I will, however, continue working with NHS England to ensure that palliative and end of life care is given the attention it deserves and needs so that it is considered important, just as we consider services that prolong life important, and that the NHS is held to account for doing that. I will continue to agree with hon. Members on the importance of hospices and the important work they do. I see this as a Minister, as a constituency MP and from my own family experience; I will never forget saying goodbye to my grandmother in a hospice near Yeovil, and I will always be grateful.
Members from across the House have spoken collectively on this important issue, with a passion and consensus that shows that the funding of hospices and palliative and end of life care is not a political issue. The Government do financially support hospices through ICBs, but funding models also require closer consideration, ensuring parity with the NHS while maintaining hospices’ independence and flexibility. The Minister has heard many similar themes, mainly surrounding certainty of funding, on a sustainable basis, and better collaboration between ICBs, the NHS and hospices. I thank her for her work, her consideration and listening to the debate. Extra Government funding via ICBs can improve a localised approach. We all call for more funding to be included in the spending review.
Question put and agreed to.
Resolved,
That this House has considered the postcode lottery of funding for hospices; and calls on integrated care boards to urgently address the funding for hospice-provided palliative care in their areas.
Business of the House (Today) (No. 2)
Ordered,
That, at this day’s sitting, the Speaker shall not adjourn the House until any Messages from the Lords relating to the Safety of Rwanda (Asylum and Immigration) Bill shall have been received.—(Aaron Bell.)
Contains Parliamentary information licensed under the Open Parliament Licence v3.0.